BADD: The Perils of Looking for Housing

I said I was going to write about my NYC housing search a year ago when I actually did it, however, obviously failed miserably.

The short version is that about a year ago, I got a job in NYC with less than a week to find housing before I started work. I went around with a real estate agent and found an apartment that wasn't going to work well, but was "good enough". I've spend the last year hauling my wheelchair up and down 5 steps to get in and out of the building. I knew I'd never make it past a year in this place, but it's what I could find. The real estate agent I used at the time also really didn't care about what I needed. He was looking for his commission, but enjoyed his playing games (one of which caused my mother to stand out in the rain for an hour and a half) to see how much he could really make out of it. He was not a good experience.

Throughout the past year I've been looking. And looking. And looking. I was wary of real estate agents a bit because the one I had last year knew nothing about access. I tried contacting the NYC CIL (no response) and as far as I can tell I'm in a weird no-man's land. I don't qualify for public housing benefits because I have too many assets. Those assets are in stocks so they don't count towards what landlords consider to be money that can be used for rent (landlords don't actually include assets at all, only income). And I make a low enough amount that if I didn't have the assets, I would definitely qualify for some of the low income housing in NYC. Luckily, I do have the assets and I have support from my parents.

The catch with looking for any sort of accessible apartment is that there's no list anywhere. I'm not just saying there's no list of available apartments, but that I have yet to find a list that tells me even where it's worth looking. I don't need full access. I can stand/walk a tiny bit, can't cook on my own for non-wheelchair related reasons, and come complete with my own shower chair and creative ways to get on and off toilets so that I don't need bars. I do need flat entry, especially as I need to move from manual chair to power chair (there are reasons power assist and scooters don't work for me) if I want to continue working much longer. And there's no way to tell flat entry without physically going to the place and looking. Databases do list things like "elevator building", but I'm in an elevator building now so it really tells you nothing.

Luckily, somewhere along the line I found a real estate agent who actually has taken me seriously. She has spent the past 2 days physically going around to buildings to look at whether they have flat entry or not so that I don't have to put what little energy I have for looking at places into doing that sort of work. She's been keeping an eye out for it since I contacted her a few weeks ago when taking people around, whether they need wheelchair access or not. And she's absolutely appalled by the lack of information. She has friends and family who also work in real estate and they've identified that this truly is a place where there's no information. Some of it is due to price (if I could afford $3000/month, I could get a studio in a new building that legally has to have at least some flat entry and accessible apartments), but mostly it's just information doesn't exist. She's quickly becoming the expert among the real estate people she knows on wheelchair access. (Anyone moving to NYC or in NYC who wants her name, feel free to e-mail me, she's given permission for me to give it out)

Today I go look at a couple apartments and if none of them work for me, tomorrow we go look at some more. So hopefully by middle of the week, I will know where I'm moving. But what's amazing is that she's allowed me to have options. Last year I didn't. And they're options on my terms, not based on half-assed research or assumptions. And it seems to be that this may be a beginning to more information for others with similar access needs as well. I'm certainly hopeful.

Adventures in NYC

Most of the time I don't find my disability all that disabling. I can live with it and what it has for consequences. When I'm at my parents there are stairs that I can just barely manage, but they're also more than willing to help me get around or get things for me when they can. At uni I was in accessible housing so things were flat and I could get places on my own.

Recently, however, I got a job in New York City. This would have been fine, except I had less than a week in which to find housing. Finding housing in NYC in that amount of time is a daunting for anyone, but when I had to keep in mind things like the length of my commute and the fact that I couldn't do a walk-up it became more and more complicated. And I got to the point where for the first time I really hated the fact that I had a non-normative body. I was conscious that it shouldn't be something I criticized myself for, but the rest of the world, but it really didn't matter. Trying to find housing you can afford with my job is hard enough. Most people live out in a borough with several roommates and live off ramen/other cheap food. I can't do that. I need real food and while having a roommate may have been nice, my experience is that it's much harder for me to live with others now unless they mostly leave me alone. And, quite honestly, once you start looking at Manhattan housing, it's about the same price to find a "cheap" studio as it is to share an apartment with someone else in most cases.

In the end, I still had to compromise on accessibility. I can walk/crawl/mobilize myself just enough to get me and my wheelchair up and down the steps into the building. There's an elevator, but I have a ground floor studio so that part doesn't matter as much. In any of the areas that were at all feasible for a commute to where I'm working, however, anything that was truly accessible with no steps was waaaay out of my price range. I'm hoping that maybe with more time to search, I'll be able to find a more accessible place for when my lease here works out, but I'm not holding my breath. And other than those 5 steps, it's a fabulous place. Larger that I was expecting and well maintained and in a wonderful neighborhood.

My commute isn't great, but that's due largely to the fact that I haven't had the time or energy to figure out the bus system yet. The subway station closest to my flat is accessible, but the closest station on the other end is 10 blocks from work. So right now I'm wheeling that distance. My shoulders may never forgive me.

Work itself is wonderful. On one of my first days my boss told me straight out that she'd just assumed my wheelchair wasn't going to be an issue because I never mentioned it as being one. And it hasn't been. I have to pick things up/drop things off at another building almost daily, but it's only 2 blocks away and they're flat blocks. They've also been incredibly wonderful about the fact that I had a pre-planned holiday that I was not giving up to get the job so that after having worked 3 weeks, I leave Wednesday to spend just over 5 weeks in Europe. I'm looking forward to the holiday which will mostly be spent with a friend sleeping while he's at work as I didn't get much of a break between finishing uni and this job.

So maybe now I'll start writing here more now. I'd like to, but I just haven't had time. As well, for awhile, I was concerned that it was going to end up being very related to my thesis, but now that I'm done, it's less of a concern.

Travel Time

I recently returned from a 3 week trip to Scotland to see friends. One thing I ended up thinking about quite a bit during the trip is how I travel differently from my those I know without disabilities and compared to how I travelled with my family as a child.

My father loves to travel. Specifically, he loves long trips that fit in as much distance as possible. We would do five hour drives for days in a row to go somewhere. Once we were there often there was hiking or something else. Even as a kid, this was problematic for me, but because I was supposedly completely healthy and able, I wasn't given much choice. A good example is the last family trip I went on in 2003. In 17 days we stayed in 12 different places. We went as far south as Salisbury, east as Norfolk, west as (I think) Bangor, and north as Inverness. We did this all driving. I remember days of my just being curled up in the back seat exhausted because it was all I could manage. I was very poorly at the point that we got home.

These days, my type of travel is slow. In 3 weeks in Glasgow, I spent most of it curled up on my friends' couch. And, honestly, I liked it that way. I like staying with people and getting a sense of how they live rather than being a tourist. I like going out shopping and to pubs rather than seeing every sight possible. Plus, I just can't do the tourist thing anymore. We'd go out for a few hours and I'd need at least a day of rest. Luckily, one of the friends I was staying with I knew due to disability and so this was less of a problem. He understood that I was perfectly fine watching television or movies rather than going out and doing things. I had a marvelous time, in fact. In a lot of ways, the trip couldn't have gone better.

Of course, on this trip, I also discovered that I really do have increased limitations. One of my friends offered to push me around a bunch. Not only did I let him, but I realized that if I hadn't, I wouldn't have managed half of what I did. This is very different from the last time I travelled on my own. Then I was fiercely independent, especially about things such as pushing myself. I can't do that anymore and while it's not a huge problem, it does mean that I'm probably not going to be able to travel on my own as much. My friends did a lot to take care of me and, unfortunately, it was needed, no matter how much I'm loathed to admit it.

This trip, luckily, only had one disability travel related "surprise" in that on boarding my flight to Glasgow from Amsterdam, where I had a layover, it turned out I had to use the stairchair. Honestly, it wasn't as scary as I expected. What was more frightening was when the guy assisting me (I was too exhausted to self-propel between gates) looked at me and said "You can't climb stairs, right?" as if this was something they hadn't thought of despite the fact that I'd made it very clear that stairs were not a possibility for me as far as boarding and deplaning went. While in general I can manage a few stairs, when I've been sitting for hours and am exhausted in the middle of travel is not a time when it's possible. Also, I think it was closer to 20 stairs to get into the plane (it certainly felt that way). I can't do 20 stairs like that ever.

In good news, my wheelchair made it through 4 flights with no damage. Also, Glasgow had an amazing number of taxis with ramps. When planning the trip, one of my friends had said that it was true, but I really didn't believe it until I saw it. They also really weren't very expensive which was also nice. (That is, of course, relative, but I'm used to taking taxis in NYC and Philly so it seemed cheap to me) Also, I'm always impressed by the way people I encounter in the UK seem to be much more willing to work with me to make things accessible than places in the US. In the US I tend to get ignored, but I had people helping me with doors and getting my wheelchair up steps, etc. As well, people respected me in the times I said I didn't need help. While I've had several people in the US ignore me when I tell them that I can make it up a hill without a push or something similar, I've not had that problem in the UK. People asked, but respected my answer. If anyone has any ideas on the reasoning behind the difference, I'd be interested to hear them.

Have I Been Fooling Myself?

I wrote my Blogging Against Disableism entry in my other blog about how hard it's been to fight for recognition as someone with some sort of unknown chronic illness. I talked about the years of not having doctors believe me that there was something physically wrong. I talked about the feeling of validation when my psychiatrist said that I didn't have a conversion disorder. How good it was to find someone who believed me.

Well, today I was reminded of how much it sucks sometimes when someone takes you seriously. I'm living in NYC this summer and have been having phone appointments with my psychiatrist every week or two. Today she told me that she had things she wanted me to research or think about before our next session. There were various non-disability related things. But then there was that she wants me researching mobility scooters and what it would take for insurance to cover one. For me, that's like another step up on the assistive device pole or something. First time a doctor has suggested some sort of mobility device without my bringing it up first myself. That wasn't the real kicker, though. The real kicker was that she also brought up the idea of my looking into applying for disability. It was like a kick to the gut.

What really got me was that a doctor was suggesting these things. Really for the first time it was a doctor of any type telling me that my physical health isn't going to get better. And that was rough. I've been venting to just about anyone who would listen because I'm not used to this. She also wants me to think about whether I'm discounting my disability by separating disability and impairment. (Yes, I'm an American who likes the British “impairment” vs. “disability” over people first language) Really now I'm just kinda scared. I'm used to fighting for people to listen to me about what life feels like. And while I wouldn't take back a single thing I've told her, I'm scared to know that she's reached the conclusion that things are this serious. I've spent part of the evening almost in tears and I know that when I talk to some of my friends about this, I probably will cry. There are other concerns I have, but I won't get into them here. But I just feel like it's rough.

A Tale of Two Lifts -- For BADD 2

Just about any wheelchair user who has ever been in a building that has been retrofitted for access has come across a platform lift. They are those lifts that really aren’t supposed to go much farther than 4-6 steps. They’re usually open on top and are key operated. In the past couple months I’ve had several “interesting” lift experiences.

Experience 1:

At a taekwondo tournament, there was a lift down the side of the gym area from the upper level where registration, snacks, the entrance to the gym, the accessible bathroom, and where they were selling t-shirts (and other things) down to the floor where the tournament was taking place. The community college that owns gym we were using has a policy where they cannot leave the key in the lift. This meant that every time a wheelchair user needed or wanted to go up or down, we had to find the person with a key and get him to get us up or down. While I hate that places have that policy, it generally doesn’t bother me. This time, however, it did. The person with the key was not easy to reach. He was not within site of the bottom of the lift most of the time and didn’t have a radio or anything by which we could contact him. At one point they had to announce over the loudspeaker that someone needed to use the lift. Because of these problems, the friend I was with and I ended up just coping with the inaccessible bathroom in one of the locker rooms, had to bring our own food, and nearly didn’t get tournament shirts. It was ridiculous. I often waited 10-15 minutes before I could find someone who could find the man with the key. I was not happy. The sad part is that apparently until the last few years, they didn’t even have the lift and you had to go outside and around the entire building to get from the top to the bottom.

Experience 2:

A week after that tournament, I went to Lunacon at the Hilton Rye Town (also known as the Escher Hilton). This hotel was retrofitted at some point to become ADA compliant. As a result there’s a very short lift going up to the bar and fancier of the two restaurants. (there is a back way that involves going through the kitchen) Thursday night I decided I wanted to go to the bar. I asked at the front desk and someone found the lift key. I had a drink and then was ready to leave. There was someone right there with the key. I got in the lift and whoever had the key lowered me down. But then the door wouldn’t open. That’s a common problem in lifts, usually, it means that you are too low or too high. The person operating the lift pushed the up button intending to bring me up a couple inches and then back down. Nothing. The lift wouldn’t budge. Long story short, I spent about 20 minutes stuck in the lift until they managed to pry open the door to get me out since they could not figure out why it would not work. The entire time I was stuck, however, there were people there. They offered to get me food and were very apologetic and helpful. Ultimately, I came away with a much better experience from this than from my other experience. For the rest of the weekend to get to the bar I went through the kitchen.

What makes these stories so different for me is how the people involved handled them. At the tournament, I was made to feel like a burden. I was inconveniencing them so that I could get around. There was a certain sense that because I could not walk up and down stairs, I was not entitled to be able to move freely around the venue. Even more obvious was the impression that I should not be out without someone who could walk up and down the stairs. At one point someone said “just sent your instructor.” I couldn’t do that due to her position at the tournament. And even if I could, I wouldn’t. At 22 I can take care of myself. At the hotel for Lunacon, they never made me feel like it was my fault that I could not get places or like I did not have a right to be there. There was no assumption that someone else could get things for me. So while, I spent 20 minutes stuck in their lift, I’d much rather deal with them and their lift than go to a tournament in the venue used.

I'll be participating in Bloggin Against Disablism Day this year.

Dancing With the Stars

So everyone is talking this year about how Heather Mills is on Dancing With the Stars and the "how are they going to work around her prosthetic leg?" issue. One, I'm not sure it's going to turn out to be as big an issue as the press has made it. Two, I think they made the wrong first step in terms of giving her a partner who is used to working with making adaptations due to physical ability levels past.

What most people do not know is that one of the pros this year has experience dancing with people with disabilities, specfically wheelchair users. It's not listed on his bio and he was not placed with Ms. Mills. How do I know this then? I've danced with him. Brian Fortuna's mother is the AB choreographer who has worked with American Dancewheels Foundation, an American style wheelchair ballroom organization, since it began. For a short time about a year ago, I danced with ADF. Brian, when he was around was part of a two-couple tango I was in. I also danced with him a couple times during training. He's a good dancer both with AB and disabled partners. He also knows how to adapt for physical disabilities. I have to wonder how many pros are that flexible. I think it's unfortunate that Brian will not be given the chance to show his talents on that side.

Of course, I'm now looking forward to the day that they put Stephen Hawking or another celebrity in a wheelchair on such a show, too.