Tough Decision

The Dean of Students has offered me a tough decision: do I ask for a withdrawal from my research, or do I ask for another extention?  Either way it would need to be approved by my supervising professor, and I’m honestly not sure which is the better move.  I think he would probably approve either.

On the one hand, I know my friend would want very badly for this work to continue.  On the other…on the other, I do not know if I can do it, or when I will be able to.

What would you do?

Advertisement

Read Full Post »

Working on Chronic Illness Time

One of the frustrating things about having a chronic illness is that you often have to work on its time.  You can have all kinds of plans, only to have your illness decide it feels like kicking your butt worse than normal.  Or maybe you plan for things to be bad, only to have a good day.  Maybe you just THINK it’s a good day, so you over-extend yourself until you’re near collapsing far from home.  Or maybe you just have a bipolar meltdown and are having trouble getting out of bed because your sense of impending doom is so damn intense.

I’ve been dealing with a lot of stuff healthwise lately.  The prescription they put me on for the pain and swelling in my joints seems to disagree violently with my GI system.  My pain specialist told me to go off it for a week, which helped enormously with my GI but wrought havoc on my joints.  They’re now almost as puffy as they were when I first went to the rheumatologist.

It’s frustrating, because I’ve made commitments.  I’m working on a research project that is intended to become an article written with a friend.  It’s a big deal – law students rarely get journal articles published, so if I do, it’s a major feather in my cap.  It’s also on a subject I care a great deal about: privacy and the internet.  You see, I think we should be able to talk freely and read freely, without someone able to track every website I visit and every comment I make easily.  I think it’s a good thing if it’s hard for the government to just jump in.  If it’s important, the government has the resources to break most privacy systems that exist, they just want to have things set up so that it’s easier to do.  And if you make something easy to break, the government is not likely to be the only entity to take advantage of that.

Anyhow, I’m getting sidetracked.  So I have this project that is important to me both career-wise and in principle.  I have deadlines and people relying on me to do work, and frankly sometimes I can’t.  Sometimes my body is so broken that doing anything but lying in bed reading a novel I’ve already read a dozen times is impossible.  When things are bad, even a new novel – no matter how straightforward it is – is more than I can wrap my brain around.

When you work on chronic illness time, you have to have some give in your schedule.  Maybe you’re lucky and have a flex-time schedule that allows you to get your work done whenever you are in the condition to do it, whether it’s 9 AM or 2 PM or midnight.  Maybe you work few enough hours that you can rest enough between them to keep going.  All told, though, it’s hard.  It’s hard and it’s frustrating, and it makes you look like an unreliable flake to others.  It makes you feel like an unreliable flake.

For me, that inability to know how well I can keep my commitments is the hardest part.  It makes me question whether it’s worth it to finish law school, because I don’t know if anyone will be willing to hire me afterwards, or if I’ll be able to work for myself.  It is the one hint of bitterness for me in my fiance’s success at getting his job – the knowledge that such a job may never exist for me.  And it is only a hint; the vast majority of me is deeply happy for him.  And, er, also pleased that there will be money to buy shiny things, like fancy things to put in my hair and nice fiber for my spinning wheel and a silk robe to wrap myself in.  Okay, so I’m a hedonist and a glutton, but these are the small things that make me happy.  (If you’re curious about the nice hairthings, I’m going to be buying a hair fork from these guys – http://www.etsy.com/shop/grahtoestudio?ref=fp_ph_2&src=prvshp.  I am thinking about getting something custom – they had this lovely fork with a crescent moon at the top, and I think I want one of those in maple, which is pale and lovely.  Also, if you’re thinking about buying something from them, please tell me, because they have a referral program whereby I can get credit towards pretties.)

Ye gods this is a wandering entry.  I should know better than to write tired, which I am doing.  My block had this godawful block party today that involved a DJ playing music at rock-concert volume.  In the house with the air conditioner running and good earplugs in, I could still make out every word of every song.  It has left me with a bit of a headache, I’ll admit.  Also, I just went back on the medication I mentioned earlier, so it hasn’t had time to do me much good, which means that everything HURTS.

So this is what working on Chronic Illness time looks like: this is the time when your chronic illness makes it hard for you to write coherently and cohesively.  I know what I’ve written can be read, and the meaning is reasonably clear, but it rambles and forks like a bramblebush.  And why?  Because it’s hard to edit when you’re like this, and it’s harder still to make yourself stay on topic.  Obviously my mind in this state is pretty useless for researching for an article, much less trying to write anything!

So goodnight, everyone.  Hopefully, tomorrow will be a more brainful day.  Also, look for the announcement for the next Assistance Dog Blog Carnival here sometime before Friday.

Read Full Post »

Just a quick little post –

Hi everyone, I just wanted to let you know where things stand.

We’ve upped my dose of the medication that treats my POTS, and thus far it seems to be at least somewhat helpful.  I’m having much fewer dizzy spells and haven’t collapsed again, which is good news.

School-wise, I decided it was in my best interests to withdraw from my classes.  One of my classes, instead of withdrawing, I am being allowed to get an extention until August 29th, which means I can basically not work at all on it until the end of May without problems.  That’s what I figure I needed, to get things under control health-wise.  I am disappointed to do it, but I don’t see a better option at this point in time.

As far as the blog goes, part of the quiet lately is because I am writing up a truely massive post about what it’s like to live with my disabilities, singly and as a whole.  I hope you enjoy it, when I finally get it up there!

~Kali

Read Full Post »

Balancing career and disability (part 1)

Here’s one of those nasty secrets about having a disability that you don’t really understand until you royally screw it up: balancing a career and a disability is very, very hard.

It’s something I’ve struggled with personally, and something I’ve watched friends and acquaintances struggle with. Part of the trouble is that the world outside tends to have an all-or-nothing perspective on work: either you can or you can’t work full time, you can or you can’t ‘hack it’, you’re part of the workforce or you’re some bum on disability. It’s a pretty damn unflattering look at us, very ableist, and something that puts a great many people in the netherworld of not working and not being on disability.

Here’s the truth: a lot of us who are disabled can’t work a traditional, in the office, 40+ hour work-week. Some of us could do the hours no problem if we could work some portion of them from home. Some of us need some kind of accomodation, for example being able to lay down or recline comfortably, and then we’d be able to work those hours. Some of us can’t work that many hours. Some of us could work the hours if we had flex-time scheduling and could work when our bodies let us (doubly so if we had that flex-time scheduling from home).

Where does that put us? For many of us, it puts us out of work. Your average employer is deeply ableist and doesn’t believe that a person who needs accomodations for their disability will be able to contribute adequately. They don’t want to make accomodations for us, because they have this odd idea that if they change anything for me, they’ll have to change it for every Tom, Dick and Harry who ask for it. They want me to prove that I’m good enough, in a trial where I’ll be under scrutiny every minute and where my mistakes will be weighed more heavily than an able-bodied person’s. Perhaps hardest of all, often you have to ‘prove yourself’ before you can get your accomodation – unfair and illegal, but something we see distressingly often. Or at least, it’s illegal if you can get a doctor to say you need the accomodation – a whole other problem that I’ll address in a later edition.

Sometimes our accomodations are small. Having our hours scheduled in a particular manner. Not having work and training on the same day. Not being stationed in a smoking area. Written rather than verbal instructions. Space to do medication injections. A binder shoved under our feet to prevent low back strain.

Find me a law firm that will give me a recliner for my office chair, with a wireless mouse/keyboard combo and a screen that can be moved into position, and you’ll have one shocked Kali. You’ll also have a woman who can work. A woman with a damn good instinct for trial practice, according to a trial professor, and a heap of passion for the kind of work she wants to do. Yeah, I’ll still need some flex-time – it’s physically impossible for me to make it in to an office before 9:00 and that’s just how it is. But having that kind of chance…well, it’s something we don’t get very often.

Instead, we end up in positions like my friend B. Not long after B started working for her current employer, she was told that it wouldn’t be a problem that she needed to work from home sometimes, not to mention occasionally taking off for doctor’s visits, which she’d make up for later. The face her employer initially showed her was a disability friendly company that would work with her. Instead, B is finding that when she says she’s going to work from home, her boss harasses her. She catches hell about missing time at work, even though she takes home piles of work on the weekends. B is so run around and overworked that she is barely able to take care of herself, and she’s really running herself into the ground trying to keep up. Because of this non-disability-friendly treatment, she has had to quit for her health. Her boss justifies it by pointing out that they’re a small company and don’t have people to take up the slack, but the thing is that they’ve more or less broken promises to her. There’s some question about whether B could work fulltime even with accomodations; I won’t pretend like it’s just the way her office treats her. And the job is a more-than-fulltime job for an AB. The thing is this – she doesn’t really get a chance because her employer plays ball on paper but makes her life hard in reality.

It’s not always bad. Some employers really do work with us. My friend Miss Waxie, who works for a university, gets time off for her doctor’s appointments, and is allowed to borrow an office when she needs to inject her medications. She also has a boss who watches for fatigue and tells her to take off. Her co-workers give her written notes instead of verbal requests, because her memory requires it. (You can find Ms Waxie at http://www.acomiclifeindeed.wordpress.com)

Likewise, my friend M, who works in travel, has been able to negotiate work-arounds for her, though she had to prove herself first. Once she had ‘proven’ herself to her superiors, she was able to make sure she wasn’t scheduled for training and work on the same day. She keeps more at her desk than most of her co-workers, though she does get a little flack about needing to keep her desk clean. She does things in the way that is most efficient, even if it isn’t quite the same way policy or the rest of the office does it.

But negotiated arrangements aren’t always safe. G has asthma. She worked as a host in a restaurant at a resort. There were 2 positions for hosts inside the restaurant, and one just outside. The restaurant was non-smoking, but right outside of the restaurant was an open-air bar, where people did quite a bit of smoking. During the winter months, it was okay, because the prevailing winds blew the smoke away. But as it warmed up, the smoke got blown in, and G started having asthma attacks. She went to the manager, who said that G would no longer rotate to the outside posts, much to the annoyance of the other hosts. The other hosts harassed her in front of a supervisor, who did nothing about it and in fact thought they were justified in harassing her. A few months down the road, the other hosts hounded the manager into forcing her outside. G ended up having to quit the job. She probably could have fought the resort, but since the problem hinged on the behavior of a manager, she had really lost faith in her employer caring about her.

Here’s the other thing – it’s not always about our jobs working with us (or not), it’s also about us working with ourselves. My first year of law school, I was determined to go to school full time. I wanted to carry a full course load like everyone else, making no accomodation for myself! I did nothing but go to school and go home, eat and sleep. I was miserable, with a brand spanking new disability I hadn’t figured out yet and a load of classmates and professors who didn’t understand. I’d always carried a full or overload course load in my academic career, so I couldn’t admit at first that I could no longer do that. In the end, it took one professor failing me for missing too many classes and the dean of students kindly but firmly encouraging me to drop down to a part-time load to get me to see reason. And at that, it was a very traumatized, upset ‘seeing reason’. I don’t know what I would have done if they hadn’t stepped in; no, that’s not true, I know what I would have done – I would have kept driving myself into the ground harder and harder until I broke.

This entry is brought to you by something that happened recently – I made a good career choice, but a foolish health choice. I got a part-time job working for a judge this summer. I’ve worked for her in the past, so I know her office is pretty laid back. I also know I can tell her I’m working 3 days a week, and won’t be pushed past that. Now, for my physical and mental health, I know I should have taken the summer off. I’ve been plagued by severe migraines and wierd maybe-they-were-seizures. I’ve had dislocation problems, and probably need to get the majority of my braces replaced. I’ve been learning to live with a service dog, which is actually a lot of work (mentally and physically). Taking the time off would have been a much wiser choice. But for my career health, it’s much better that I not take the summer off. The legal world does not look kindly on summers where you neither take classes nor work. So…I work. For better or for worse. At least I know, up front, what I’m heading into.

Read Full Post »

Oh my, your privilege is showing!

As you all know, I’m a law student. I’m taking a ‘practical skills’ course called trial advocacy. The idea is that we act like ‘real’ lawyers and research and argue our cases.

The case we have for this semester is a sexual discrimination/sexual harassment/defamation case. The gist of it is as follows. A woman (who is a single mother) had been a paralegal at Employer. She went to law school, got her degree, and managed to land a spot as an associate. In her 5th year, her father gets cancer and dies, so her work is kinda sucky. During her 6th year, she and High Powered (married) Male Partner get into a relationship. (before this happened, he had said and done things that were romantic/sexual enough to make her uncomfortable, though she never reported it) This relationship is NOT the first time he’s had an affair with a female associate; it’s happened several times. They have an affair for a while, and he keeps promising to leave his wife. She gives up on him leaving the wife and ends the relationship. Soon after that, she stops getting as much work offered to her, which means her billable hours drop – serious bad news. She talks to Mr High Power and another partner she’s worked with, and they advise her to put off trying for partner for a year. She ignores their advice and tries anyhow. She fails to make partner and is given 6 months to find a new job. She applies to several places, but Mr High Power sends out very lukewarm recommendation letters, and she is not able to get a job in the city.

So she brings suit – for hostile work environment, for sexual harassment, and for sex-based discrimination, as well as for defamation.

On Wednesday, we were having a mediation. I’ve been assigned to represent the defense – that is, the law firm and Mr High Power. I am, as I’m sure you can guess, displeased with this.

So for mediation, 1/4 of the class is in the classroom at any given time, and the rest of the class is outside. We’re sitting around killing time. The guys are joking around about this case.

One of the guys says, quite seriously, that a man who has worked that hard and been that successful has a right to enjoy what comes with it – the attention of women. If ‘they’ keep biting, how is that his fault?

In the classroom, one of the other guys jokes with the professor that our new corporate sponsor will be Hooters, and similar things.

I was floored. How could they see nothing wrong with this situation? How could they think that this was funny?

Gender based discrimination is rampant in our field, and it becomes clear why that is. It’s not just that it’s an old boys club (which it is), but it’s also because my male cohorts see nothing wrong with women being hit on and harassed at work.

Sadly, this is not the first time I’ve seen this in law school. My first year, we had a writing course. Our first case was a fairly bad sexual harassment case. We were reading cases that were on the books, because in the field of law decisions are based on prior decisions. The cases we were reading were horrific, truly awful, and my male partner was ‘joking’ that the women in question were wimps and whiners for complaining about what was happening.

Oh my, yes, their privilege shows so very often. And I find myself wondering…what can I do? I do tell them that what they’re saying is inappropriate, and try to explain why. This looks like a systemic problem, based on the common concept that women’s bodies are openly available to whoever wants them (and it is a woman’s responsibility to stop someone if she doesn’t want to be available). I can’t break down their prior training, the acculturation that lets them think this kind of attitude is alright.

I’m angry and hurt and spitting mad and I can’t do a damn thing. Why? Because if I complain, if I try to make them understand, I’m just a no-fun shrew raining on their parade because I want to be treated as something other than a sex toy. Boo bloody hoo.

Read Full Post »

Disability and disasters

One of the unfortunate things about the cultural phenomenon of disability is that we rarely make contingency plans for PWDs, and even more rarely do we make effective ones. Even if there is a contingency plan for PWDs, it’s not uncommon for us to be left in the dark about what they are!

This particular post is partly inspired by the disaster in Haiti, partly by the massive snowfall in the mid-Atlantic, and partly by my experiences with fire alarms.

So, Haiti. We have a country where a large amount of the major infrastructure has been destroyed. The roads, government programs, buildings, hospitals – a great amount of the services people rely on are in ruins. This becomes particularly problematic when you are disabled. To get food or safe water, you must wait in long lines – something that a person with a disability like mine would be unable to do. Much of the shelter that is available is not accessible, as Haiti does not have a law comperable to the ADA that would require at least some degree of accessibility. (I’m not going to go into how limited that requirement is, or how often it’s flouted here. We at least theoretically have standards that increase accessibility – Haiti does not) Medication and medical care are scarce, including supplies like catheters and osteomy bags, which are necessary for some PWDs.

This is all compounded by the fact that most of the operatives for NGOs are able-bodied people. Their first priority is to serve the masses as much as possible, and because people with disabilities might need more assistance, they get de-prioritized. We also need different services sometimes, and the NGOs are trying to provide the basics that everyone needs rather than the specific treatment needed by comparatively few. Finally, when planning these big operations, most NGOs do not give much consideration to needs of PWDs – they are mostly AB and thus have the luxury of not considering what a PWD needs day to day. Because of this, their plans do not include making the necessary arrangements for PWDs. In short, we are forgotten people.

Let’s talk about these big snowstorms recently affecting the mid-Atlantic region of the US. These were relatively severe for that region, in terms of deposit – 20+ inches each storm. Worse yet, two of these storms were within a week of each other, and there was not enough warming in between for the snow to fully melt – just enough to form a layer of ice under the snow.

So, you have deposits of up to 55 inches in the space of 1 week. The major streets get plowed and salted, and in some areas even the sidewalks get salted. But only in some areas, generally the most expensive parts of town. The smaller streets do not get plowed or salted at all, and this results in a problem.

With drifts up to mid-thigh on a man, the streets are massively unaccessible. I’m a relatively ambulatory PWD – I walk with the assistance of my service dog – and even I can’t go more than a few feet. We sink into the snow, skid, get soaked, and get exhausted. The car is buried, and worse than that, in many areas once you park, you can’t get back on to the road. Why? Well, the road hasn’t been plowed or salted, just packed down by people driving over it, so there is a 4″ pack of ice sitting on the road. The last time we got stuck in one of those spots, it took the boyfriend and 5 men, 2 snow shovels, 1 heavy metal shovel, a cardboard box, plus 2 cups of road salt the coffee shop gave me, to get us back onto the road. People aren’t just getting stuck in their parking spaces, they get stuck on the road as well, completely blocking our little one way streets. They also slide around on this unpredictable, unsafe surface, resulting in accidents and very close calls.

And thus, I am only able to get out of the house because of my boyfriend and the car. He drops me at the front door of where ever I am going, because I can’t walk far in this mess. He digs the car out. He’s shoveled more snow in the past week than in the two years before that. If we didn’t have a car, I’d be completely housebound because our sidewalks are still over a foot deep in snow and slick with ice. Most people walk on the roadway, which is treacherous ice, because the snow drifts haven’t been packed down in many places. If I was in a wheelchair, I’d be out of luck. Why? Because the cities don’t salt or plow residential areas when the snow hits. Even a small amount of snow makes accessibility questionable. And even in areas where they do salt or plow the streets, they almost never plow or salt the sidewalks, leaving a person with the options of attempting to slog through the snow (and the plow leavings, where they cross streets) or slip and slide along the road and hope they don’t get hit.

When it comes to snow and other weather disasters, the city doesn’t think about us. We get forgotten again.

And then there are fire evacuations. In fires, you aren’t supposed to use the elevators. People who are AB or ambulatory get sent down the stairs. And the rest of us? We get told to wait in a ‘fire isolation’ stair if one exists, with a promise that someone will inform the firefighters that we are up there. What if the fire moves too fast? What if no one remembers to tell the firefighters to come get us?

When buildings are built, our ability to evacuate isn’t considered. We are supposed to be content with a plan that relies on A) a person remembering we are in the building B) telling someone who can help us and C) that person being able to help us. We have no ability to help ourselves, take initiative, even direct matters to go in the way we desire. No autonomy.

Oh yes, we are forgotten people. When disasters strike, there is often very little planning for our safety. Subways have escape routes, but they rarely have escape plans for PWDs outside of ‘someone could carry them’. No plans that respect our dignity and autonomy. Tall buildings have much the same problem. Emergency evacuations because of natural disasters face, again, the same problem.

The worst part is that we are rarely informed about what we are supposed to do in an emergency. I had to ask the administration at my school to find out where I was supposed to go in a fire, since I can’t manage multiple flights of stairs. If our house were to burn down, it’s hard to find out which shelters would be accessible to me. In emergency evacutations, the place for PWDs to be picked up are often different…and announced at a fraction of the frequency that other evacuation sites are mentioned. Even if there are plans in place, people forget to inform us.

If you are part of an organization, see if you have a plan for the evacuation of people with disabilities. If you do, does it respect their autonomy or does it make them rely on someone rescuing them? Is it well publicized? Do you post notices or send out memos to make sure that everyone – both people with disabilities and ablebodied people – know what the plan is?

If you didn’t like your answers to any of those, talk to your administration and management and see if you can change them. Don’t forget us.

Read Full Post »

Not so cute

So, it turns out that Hudson and I have matching ear infections.

His is still at an early enough stage that I may be able to clear it up by just cleaning his ears twice a day. Mine, on the other hand, is now an ear and sinus infection which is going to require antibiotics to clear up. I just started them yesterday and have a 10 day course to take. It’s not exactly my idea of a good time.

Blah. I’m supposed to be taking depositions in class tonight, and here I am with my ear screaming pain. Just what I needed. The stupid thing has been fairly quiescent, just feeling kind of pressure-filled, but as of about 20 minutes ago, it started to feel like someone was poking around in my ear with a knitting needle.

Gah.

Read Full Post »

Just a quick note for tonight –

A piece of fantastic language out of the dissent in a Supreme Court case. Dothard v Rawlinson, 433 U.S 321 (1977)

“Once again, the pedestal upon which women have been placed has, upon closer inspection, been revealed a cage.” (internal quotes not indicated)

An entirely too true statement; so often, women are trapped by the supposed pedestal that they are placed on. I’ll admit, it makes me smile that these words come from Justice Marshall, a man who was amazingly consistent in his championing of the cause of equality.

I think this can be true of the way PWDs are treated as well; especially on topics like token assistance. I believe I’ve mentioned token assistance before – it is the type of assistance where a person who is AB does a small act, one the PWD can usually manage for themselves, and it is usually motivated by this need to feel good about doing a favor for a person they believe obviously requires the assistance.

You hold the door open for me because you do not think I can manage it on my own, or that I ought not have to struggle with it. Yet, please, consider – if you do not allow me to practice my adaptations, like using my service dog to pull doors open, how much more I will struggle when there is no hovering over-helpful person to ease my path? And if you do not consider me capable of doing simple things like opening doors, how much more do you decide I am incapable of because you have noticed I have a disability? It is a delicate balance between making necessary accomodations and assuming that a PWD is incapable of doing things for themselves. The balance, I find, is often best served by asking if a person requires assistance and being willing to render what they ask for, even if it is not what you expect – sometimes the best assistance is letting me do things for myself.

(For those of you interested: the case was involving a refusal, in Alabama, to hire women for ‘contact positions’ inside of prisons – that is, any position in which the person would have contact with prisoners. The claim was that there were sex offenders in there who would offend again if given access to female guards, and the lack of a ‘normal heterosexual atmosphere’ would drive other prisoners to assault female guards as well. The violent conditions, crowding, and understaffing, admittedly in violation of the Constitutional safeties that were supposed to protect prisoners, were deemed such that they would put female guards at constant risk. I find it a source of embarassment that this decision was handed down the US Supreme Court. As Justice Marshall so aptly said, the analysis sounds distressingly like saying two wrongs make a right. He was a very wise justice, Marshall was.)

Read Full Post »