Posts Tagged ‘expectation’

Sorry it’s been so long between these Career and Disability posts. Live has been a bit out of control lately, and I’m afraid my blog has suffered a bit because of that.

So. I talked a bit about what a person has to do to balance career and disability in my first post, which you can find here.

One of the things I talked about in that post was accomodations. Since I know a lot of my readers aren’t disabled, or don’t have official accomodations, I thought I’d walk you through what the formal, legal accomodation process looks like. I’m saying ‘company’ here, but this process tends to hold true for companies and for schools, though schools are required to do a LOT more accomodating than companies are as a general rule. There are exceptions.* For the record, I’m dealing with what happens under the Americans with Disabilities Act in the United States. I’m nowhere near familiar enough with other accomodation systems to write about them, though I understand the kind of push-and-pull negotiations that I’m describing happen under them, too.

So let’s start with the basics. What’s an accomodation? An accomodation is a limitation on what you can be expected to do in either the work or school environment. It is a restructuring in some way that is supposed to make the place accessible to you in an equivalent way as it is for everyone else. Accomodations can be modifications to the structure, location, or the job itself.

As soon as you know you need an accomodation at your job – hopefully before you start work there, but ‘as soon as possible’ is important here – you go to your doctor and you get a set of restrictions written up. The restrictions say exactly what you can and can’t do – for example, for quite a while I had one that said I couldn’t lift more than 35 lbs overhead and more than 50 lbs overall, to protect my bad shoulder. I also had a restriction on how long I was to be placed in a kneeling or crouching position, to protect my knees – I think no more than 15 minutes without 5 minutes of being out of that position. In order to get an official accomodation, my experience is that these restrictions have to be very specific – it can’t just say ‘no heavy lifting’, it needs to say ‘no lifting over X weight’. They also need to say what the company needs to do to accomodate your need, for example ‘requires parking within 100 yards of her office, due to difficulty walking’. The more specific the note from the doctor is, the clearer a guideline it presents to the company you’re getting an accomodation from – an absolutely vital thing. If your note isn’t specific enough, you’ll find yourself bouncing back and forth between the company/school and your doctor. “does this cover it?” “No” “Dr, can you write a note that says X?”

Now, getting this note is not always a walk in the park. Some doctors don’t like writing for accomodations, for a variety of reasons including internalized ableism. I’ve had doctors who refuse to write notes for anything but other doctors and treatment, which made me want to pull my hair out! I’ve also had doctors who were great and worked with me and faxed several versions of the note to try to get specific enough to satisfy my employer (which was REALLY frustrating for both of us). Getting your doctor to understand why you need an accomodation can be frustrating. My current accomodations letter actually came from my neurologist, back when we thought I might have a neurological disorder in november or so of ’07 – which is to say, the doctor had no idea why I had the problems I had, nor did he have any way to verify that I needed the accomodations I outlined, but he was willing to work with me because he thought it was very important that I maintain as normal a life as possible, which meant staying in school. Fortunately, by then, I knew what accomodations letters should look like, so it only took 1 version to get what I needed carried out.

Anyhow, back to the process. So now you have your doctor’s note specifying what you’re not supposed to do.

You take it to the company. Now, the company does NOT have an absolute requirement to give all necessary accomodations. (on the other hand, a school recieving federal funds has a much stronger mandate to accomodate!) The company has to give necessary accomodations when the person can still perform the core duties of the job. Many a fight over accomodations revolve around what ‘core duties’ entail, and more than a few court cases have been fought over that very point. If a company wants to fight you on giving the accomodations, this is frequently one of the ways they will do it – by saying that if they give you the requested accomodation, you will not be fulfilling one of the necessary and important parts of the job.

In theory, the question of hiring and accomodating are different processes. Your need for accomodation is not supposed to be part of the hiring analysis; they are not supposed to consider whether they will need to bend their policies and practices to work with you. However, a great many companies use the principle I just talked about to un-hire people who their hiring process approved. I’ve come very close to having it happen to me. The company cannot revoke its job offer unless they come to the conclusion that you cannot fulfill one of the central requirements of the job, but as I already said, that’s quite a fuzzy area that is often a battleground.

The company may propose alternative accomodations that they believe will equally make the workplace accessible. Your guess is as good as mine as to whether these are actually going to be worthwhile propositions – I’ve heard it going both ways. Generally, these alternatives are a matter of monetary cost. Usually, they’re what in the law we call a ‘good faith’ effort – the company is well-intentioned and looking for ways to try to make things work well for both the company and the individual requesting an accomodation. Sometimes, though, they’re used as a way to make work impossible but try to shield the company from liability – “look, we accomodated zir**, but ze still was not able to perform the job adequately.”

So now, we’ve navigated getting the note, taking it to the company, and theoretically getting an accomodation.

Next there’s actually applying the accomodation, and this is another area where there are struggles. Your accomodation may say you have a flexible schedule, but your immediate supervisor may decide ze wants to see you 6 out of the 8 hours ze’s in the office, which really does a number on the flexibility of your schedule. Especially on something like that, if the accomodation is vague, you’re in for a fight to get it applied in the way you interpreted it. The more precise you can get the language of the accomodation (and for heaven’s sake, get it in writing!), the safer you are from this kind of problem, because then you can bring out your accomodation letter and show it to your boss. Mind you, this is definitely NOT always the case. I’ve worked places where accomodations were regarded as absolute, and if my boss asked me to do something contrary to my accomodation, all I had to say was, “I’m not allowed to lift that much” and I’d get moved to doing something else. Most people, once they have an accomodation letter, will not encounter their bosses trying to…whittle away at their accomodations. However, there are an unfortunate number of people who believe in the ableist notion that accomodations are favoritism, and thus you may get harassed by your boss or your coworkers over the very changes in your environment that make working possible for you. It’s not fair, but frankly the world is often not fair to those of us with disabilities.

The long and short of what I’m trying to say is that getting accomodations is often a big negotiated struggle. It’s not always that way; I know people who have informal, verbal agreements with their supervisors that have worked out well for them (this is particularly true for short-term things, like broken legs and shoulder surgery). But here’s the thing: if your company fails to live up to the agreed upon accomodations, an accomodation that was put together through the process I just described and documented will stand up in court, and be clear on what it means. Verbal agreements do not protect you as well, in part because there is no record of what happened, so whoever you talked to can forget or misremember what was said. As with many other things this law student has said, here again, I have to emphasize…GET IT IN WRITING!

It’s not fair that it’s such a big process to get an accomodation. We shouldn’t have to work so hard to get our employers to work with us, and some are a lot better than this. I’m trying to show what a normal, average process looks like, though, and in my experience, it looks like this.

Out of the whole thing, I find myself very grateful for the cooperative, helpful doctors I’ve had, who have been willing to write for accomodations that have let me work, stay in school, and generally live the life I want. Having your doctor on your side is one of the biggest helps you can have in this process – the other one is having a company that really wants you and is thus willing to work with what you need.

* Specifically, I know that med schools and law schools have successfully survived challenges to their scheduling and attendence policies (respectively). I am not certain why medical schools have survived the challenge, though I suspect that they were able to make the case that the kind of run-around that you go through as a med student is tradition because it’s necessary to prepare you for being a resident. I know the law schools’ attendence policies have survived because it is a requirement set up by the American Bar Association, and ABA accreditation is very important in the legal world.

** I try to use gender-neutral pronouns when I remember, because these kinds of matters affect people of all gender identifications.

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One of the ways I think we can fight ableism is to talk about people who get it right. People who treat us as human beings, particularly people who are able to work with or around our disabilities and not treat us as our cultural status quo demands they should. We talk a great deal about the way the world gets this wrong, about the way we are shunted aside, about the way people turn our actual physical impediments into societal disability, but we do not often talk about when things actually go RIGHT.

(which is not to say that the discussion of how things go wrong is unimportant or finished – I think both halves of this issue MUST be publically, unceasingly discussed or we will never see change.)

So how do people get it right? The most basic thing is that they remember our humanity and respect our autonomy. To give a very basic example of how respect of autonomy works, the fact that I cannot cut up the potatoes I want for dinner does not mean that I cannot have them done the way I want. If a person who is aiding me to prepare my dinner asks me how I want the potatoes done, and does them the way they ask, then I still have autonomy because I was able to make decisions and direct outcomes. Autonomy is not about being able to do everything for yourself, it is about being able to direct your life and have things done to match your desires, whether or not you are personally doing them.

So who gets it right in my life?

The boyfriend.

The boyfriend and I have been together for over 2 years. He’s gotten used to the fact that if things need to be lifted, carried, or picked up, I generally can’t do it. That most of the responsibilities in the kitchen will fall to his shoulders, because my hands aren’t up to it. He even carries my purse when we’re out and about without getting goofy about it the way some guys do.

He’s also learned the boundary between things I can sometimes do and things I really shouldn’t do. So he’ll ask me how near to our destination I need the car parked, because some days I can walk 4 blocks and some days I need to be dropped off at the door. He doesn’t ask if I want him to take the bag after I’ve made a purchase, because we both know I shouldn’t be carrying things. It’s a delicate balance, between helping too little and helping too much, and it requires a great deal of attention to maintain.

He does not take advantage of my disability. A great many of people with disabilities, especially women, find themselves abused by their caretakers and/or partners. Any time you have a power imbalance, there is a risk that someone will take advantage of it without regard for the harm they do. I think the boyfriend would be nauseated at the idea of ever taking advantage of me in any way, and for that particular aspect of his character I am very grateful. I know, as a woman with a fairly severe physical disability and an emotional disorder, that I could easily be abused and harmed by a significant other – and some of that has befallen me in the past. But with the boyfriend, I am safe because I am never less than a person, never less than he, in his mind.

My doctor.

My doctor never talks down to me. He remembers that while I am the patient, and much less knowledgable about medicine (not to mention unable to look at places like the inside of my own ears), it is my body he is treating. When there are treatment options, he tells me, and explains why he prefers one direction over another. He does not tell me ‘You Must Do X’, he tells me ‘I think we should do X.’

It may not seem like much, but it’s a world of difference to me. Especially with complex, chronic patients (like yours truely), doctors forget sometimes that they are our advisors and employees, not gods. It’s a level of respect for my right to have input into the decisions about my bodies that is unfortunately rare.

Additionally, I never feel as if I am an illness to him. I am a person, a person he remembers is a law student who loves crafting and art and has a plethora of hobbies. It does not matter whether I am seeing him for a new issue (like my ear infection) or a chronic issues (like my back), he listens well and considers how my many medical conditions could be interacting with the issue we’re discussing. He does not grow frustrated with me because of the way my body reacts, nor am I ever abused for not being able enough or healed enough after his intervention. To my doctor, I am a patient he helps to be healthier, not a lump of flesh in need of his fixes and treatments.

My Personal Care Assistant

My personal care assistant, Nikki, has been with me for 15 months now. The relationship between a personal care assistant and a client can be very difficult to navigate. In most cases, a personal care assistant is responsible for a lot of taking care of the home and the body of a person with disabilities. There are a great many landmines that show up in the relationship between a PCA and a client.

My PCA does things my way, even if she’d prefer to do them a different way. Yeah, she thinks it’s a little funny how obsessive I am about cross-contamination, but she’s respectful about it and keeps my kitchen safe and clean. She remembers how insistant I am about having my books organized by author and series, so that I can quickly find what I’m looking for. She doesn’t complain about the messes I end up making and not being able to clean up because of my disability. When approaching things she doesn’t know the answer to, like how I want things cut up for dinner or where a new item should go, she doesn’t just decide for herself and hang me with the consequences if I don’t like it – she asks me, and she does what I’ve directed.

She also does not treat me as a paycheck. I know that some PCAs get into this industry because they just need a job and someone to pay them. Nikki actually cares about me as a human being, and we joke about our significant others, the state of the world, our neighbors, and so on. She does not lie to me. She does not steal from me. She contacts me if she is going to be late or if she cannot come so that I can get someone else to take care of me. She does not refuse to do things I request that are part of her job (and actually, is willing to go pretty far outside of her actual job requirements if I ask for help). She does what I request, when I request it. She does not make me feel like a burden. She does not use her power over me to harm me in any way.

All this may seem like things you would assume to be true about someone in the service industry, but I can assure you that I have known of PCAs who violate all of these trusts and more. Me, well, I’ve been lucky, as Nikki and the boyfriend are the only people who have ever worked for me as PCAs, and both of them have the basic respect and decency to remember that I am a human being worthy of dignity and respect. I consider Nikki a friend as well as an employee, and I value her greatly.

To sum this up, there are a great many ways that we as people with disability are vulnerable to abuse. That vulnerability springs in part from our impairments themselves, but mostly from the societal view of us as lesser beings, in much the same way that a woman’s vulnerability springs both from being (on average) less physically strong than a man and from societal ranking of women as less than men. Part of fighting that abuse is talking about it, but another part is talking about relationships that are safe, that do not involve abuse. Healthy relationships. Relationships in which we are equals, in which we are people, in which we can trust.

And so, people of the world, whether you are people with disabilities or people who are ablebodied, I challenge you to think not only on living with ableism, but to think also of times and places where we are do not.

Blogging Against Disablism Day, May 1st 2010

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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.

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I’m sure that my title there is kind of obvious to anyone who’s part of a social justice movement. This particular post is really aimed at people who aren’t, and who haven’t thought about it.

We all know that awful old adage, ‘bricks and bones may break my bones, but words will never hurt me.’ Most of us know that it couldn’t be much farther from the truth. Words hurt. We know that instinctively as children, which is why we start figuring out which words will hurt whom at a very young age. I can’t pretend I didn’t do that, though I will say most of it was tangled up in the quarrels of siblings and not vented at vulnerable people.

Here’s the thing – some words are more loaded than others. Some words are involved in systems of oppression, both empowered by the system and fueling the system. Some words are problems because they are tied to fundamental parts of who we are – our gender, our race, our religion, our disability, our sexuality, our religious beliefs. And they are painful because those words always say something deeper than that – what they say is, ‘You are not as good as me. You are not normal.’

The truly difficult part is that some of these words have become embedded in our language deeply, so that they now have a secondary meaning – bad. People my age and older have watched it happen to the word ‘gay’. You see it with the addition of the ending ‘tard’ (as in, fucktard), which is drawn from the word ‘retard’. This is when it gets insidious.

Why? Because people don’t think about the original meaning, but the word never really loses it. My father decries things he doesn’t like as ‘lame’, but he also calls me lame when I injure myself, and we call a horse that is limping ‘lame’. It means all of these things, which means that when you use it to mean ‘bad’, you reiterate the idea that the original meaning is bad. So…my abnormal gait, the thing that makes me ‘lame,’ is coded as bad.

And don’t tell me people don’t know this. Haven’t you heard kids insulting each other with the adjective ‘retarded’ and known they meant someone with developmental disabilities? We know what these words mean and we keep using them anyhow!

I’m making a list of words we should not use, but do. Please feel free to add your own, and why they shouldn’t be used! (excluding of course use in a reclamatory sense, which I’ll talk about in Social Justice 3: Reclamation)

*Blind/nearsighted/shortsighted – all references to visual acuity often used to describe making errors in judgement
*Lame – reference to altered gait used to describe things that are bad
*Cripple – reference to physical ability, usually walking ability, used as an insult. Also used as a negative adjective and verb, as in ‘a crippled bus’, ‘the strike crippled the city’.
*Spaz – reference to spasticity, used to describe erratic motion or actions
*crazy/mad/insane – references to state of sanity, used to describe the ’cause’ of all kinds of undesirable actions, without regard for the actual sanity of the person.
*psychotic – reference to state of sanity, often used to describe someone frightening, where psychopath might be a more accurate term, as psychotic just means someone who has had a break with reality (and for what it’s worth, the only psychotic person I’ve ever seen was just disconcerting, not scary – she was trying to have conversations with inanimate objects)
*schizo/schiznophrenic – reference to a specific mental illness, often used to describe unpredictable or erratic behavior
*bipolar – reference to a specific mental illness, used to describe someone who is giving two different reactions (see for example the Katy Perry song, ‘Hot and Cold’, which describes her relationship as a ‘love bipolar’)

Right, so in addition to the disability related ones, here’s a few more I put on the list of things not to be said:
*Bitch – woman as dog? Come on!
*Slut/whore – judgement made about a person’s sexual choices? Not cool.
*Racial epithets
*Gay – reference to sexuality used to describe things that are bad
*Fatty/fat as insult – referring to a person’s state of not being thin as a reason to torment and make fun of them just sucks

I know I’m missing a lot here, words that we need to really think about why we use them. In all likelihood, the best answer is to either completely remove them from our vocabularies, with a few exceptions that can be used accurately, like ‘gay’. We’re not perfect, and we’re likely to make mistakes, but choosing to engage and try to do this right is valuable.

Now, before you talk about how Political Correctness is bad or call me the PC police, trust me that I’ll get to talking about that issue in Social Justice (2) – PC Police!

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Sorry about the disappearing act there, folks. Those migraines really knocked me flat. I’ve gotten things back in hand, just in time for the semester to start (whoo boy). Right, now, on to the real entry.

I wrote a while ago about how my service dog having a bad day could mean a bad day for me. It’s a two-way street. Me having a bad day often means a bad day for him.

The worst are probably migraine days. I end up stuck in bed, with the fan on to provide white noise to cover the screaming neighbors and the general noise of living in the city. Oh how I miss the suburban house of my childhood when I have migraines! When you do not share walls with anyone, it is much easier to get true quiet, which is one of the things a migraine makes you covet intensely.

If I’m stuck in bed, Hudson’s stuck in the bedroom. On my side of the bedroom. Which means he’s got at most a 30 square feet to move around in – a 3′ wide corridor that starts with his dog bed and runs between the dresser and the bed to the door. In all honesty, it’s probably smaller than that. He’s not supposed to wander around in the rest of the bedroom, not that it’s real easy to get around in.

Because we live in an old house, the bedrooms aren’t very big. We have a queen sized bed, mostly because I sleep with a body pillow and am very demanding of my space. The boyfriend is a very average sized guy, not the kind of rail-thin waif that could squeeze in to less the 1/3 of a full sized bed that I’d leave free for him.

So there’s poor Hudson, stuck in that little tiny space. I can’t give him a toy full of treats like I do when I’m busy downstairs working, because his method of getting the treats out of the toy involves throwing the toy at the ground repeatedly, a rather noisy operation. Exactly the kind of thing that would make me start crying during a migraine.

I also can’t get up every hour or so to work on something with him, the way I do when I’m doing schoolwork. It’s part of what keeps his brain busy – we practice service tasks. We do his daily training routine. Once again, the kind of thing I can’t do when I have a migraine. I’m usually dizzy, nauseated, and in a great deal of pain. Standing up, bending over, and the other sorts of thigns I have to do to work on his training just ain’t happening. Frankly, when I’ve got a migraine, the best thing to do is sleep through it.

So that’s what we do. We sleep. At least, I assume he does, out of boredom. The boyfriend has to take the dog out to do his business, and bring his food up for me to give the dog.

When it’s a subluxed hip, or my back all a mess, the situation is much the same, though then I do sometimes remember to give Hudson toys to play with. He tends to get bored with them rather quickly, though, and so there we lay – me reading, him sleeping.

I’ll admit, I feel quite a bit of guilt for all the things he doesn’t get to do on days when I’m laid up. I mean, a dog is not meant to live in the narrow space between dresser and bed. He’s meant to go run, to play, to just be a dog. He’s meant to spend time with me, learning and goofing off. And when I’m having one of these kinds of bad days, he doesn’t get any of that.

These are not, however, the bad days I feel the worst about. Oh no. That distinction goes to the days where I am in a great deal of pain but must go do something anyhow – whether it’s going to school or a doctor’s appointment.

Then, I’m short tempered. Short on praise. Quick to correct, and harsh with my corrections when I don’t get obedience quickly. Unable to be patient when he’s getting scared by traffic or the trolley we have to ride on, because he’s hurting me.

I imagine those are the worst days for him. Getting snapped at, rarely being told he’s doing things right, me forgetting commands and needing him to do things anyhow…

These are the days you don’t imagine would happen when you set out to get a service dog. The days where your health condition punishes your dog, for no reason other than that you have to rely on him and can’t deal with imperfect work. It’s unfair, it’s harsh, and all I can do is humbly apologize to him and promise I will try harder not to do that next time. The boyfriend may understand why he gets his head bitten off when I feel like this, but Hudson does not.

I cannot express how thankful I am that dogs are such forgiving creatures, for Hudson does not hold these days against me. I think he remembers better the days when I take him to the park and throw his toy for him again and again than he does the days when I’m not fit to work with anyone, least of all him. Or at least, I hope he does.

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So, here we are everyone, Christmas evening.

The boyfriend’s parents live farther north than we do and correspondingly colder.

It’s been a strange holiday for me. You see, I have always known that when I visit my parents’ house, I intensely enjoy the climate, the culture, and my cosmopolitan old haunts. However, this year, I realized that the atmosphere stresses me right the fuck out.

Part of the reason I realized it is because the boyfriend and I visited my parents for Christmas last year, and over the summer, and then we came here for Christmas this year.

Contrasting this Christmas against last Christmas is…ridiculous.

Yes, last year we had beautiful climate and theme parks and beaches and 70 degree weather. We had short sleeves and sunshine and everywhere I’ve known all my life.

But last year was also stress, explaining to relatives what’s going on with my health, reminding people to be gentle with me, fighting (and trying not to fight) with my sister, being in the house with a 6-month old, the stress of the fact that none of my father’s family likes each other, oh god nothing is wrapped and the house is a mess and nothing is ready, and the fact that with the exception of my boyfriend, I was everyone’s last priority. (To be fair, my parents’ house at Christmas is not pure misery – there are traditions I love, and I am very very fond of my mother’s side of the family.)

This year, it’s snow – sure, less than a foot. Temperatures that they say are mild but which to me are incredibly bitter cold. Heavy warm clothing and cold feet and my god how did it get so cold just going to the bathroom?!

This summer was the first introduction of my service dog to my family, and it was frankly awful – my family letting their dog bully him, and not keeping the year-old baby off of him, and just generally making him stressed out and unhappy, which in turn makes ME stressed out and unhappy. And we had a lot of me being low on everyone’s priority list, my sister leaving horrible messes in places we had to use, and just…well, generally it was stressful and I asked my boyfriend why I thought it was a good idea to go out, why I thought I wanted to go out to see them.

But emotionally, this year has been so much easier. The only gifts this year were given because the givers wanted to – we did big goofy stockings full of silly things that everyone seemed to like a lot. His family understands my disability better than my own does. And this Christmas…there was no rush to wrap everything, no panic over food not being ready, no rush to clean away months of clutter, no push to take care of things I wasn’t responsible for. Their dogs have been very well behaved and well controlled. And finally, unlike my father’s family, my boyfriend’s family likes each other. They tease like crazy, and there’s a lot of laughter…and a lot of love.

…while I miss the warm and the cities and spaces of my home like mad, I finally am realizing that maybe I don’t miss my family so much at all. Or maybe what I’m realizing is that family isn’t about blood.

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There are categories of people whose bodies we label as public property. Bodies we can comment on, talk about, harass, own, label, criticize, and categorize. Bodies that are no longer people, just…bodies.

How often have we heard commentary on women gaining or losing weight? Aging? Getting pregnant? That’s this kind of public body issue. Why do we feel like it’s not just acceptable but appropriate? Complimentary to tell a woman that you’ve noticed she’s slimmed down, insulting to say she’s put on a little weight, but still within rights to comment on!

Disability makes a body ‘public’, too. Questions from strangers about why you have your mobility aids. Comments (often quite rude) about why you’re using the disabled seat on public transit or the disabled parking spots. Don’t get me started on what they say about people using electric wheelchairs or scooters. People feel like they have a right to assess whether your disability is real or if you’re a ‘faker’, with no more information than what they can see when they look at you.

And then there’s size/weight. I’m not sure how many of you are familiar with the recent fracas with Lincoln University. They have added a new ‘fitness walking and conditioning’ class that is required for anyone with a BMI of over 30.* Lots of things to say about this – firstly, BMI is an inherently flawed measure. It was never intended to be a measure of health, only to show where the average ratio of weight to height falls. That’s it. And it only showed what average was at that point. The equation for BMI dates back to the 19th century – back far enough that for people who were poor, periods of starvation/undernourishment when crops weren’t good were a regular part of life. That kind of skews your averages, don’t you think?

Anyhow, enough about the history. So what we have is a measure that shows what the average weight to height ratio for men was in the 1800s. Sounds pretty irrelevant to me, what do you think?

Further, BMI doesn’t differentiate between muscle mass and fat. Serious athletes tend to test with very high BMIs even though they are in almost impossibly good shape because all it assesses is weight-to-height ratio.

Okay, so we’ve talked about how BMI is useless. Now let’s talk about how this measure at Lincoln University is a bad idea.

Now, let’s get something out before I say anything else – I think encouraging people to exercise and eat healthy is a good idea. However, I think that ACROSS THE BOARD. Some of the most unhealthy people I know happen to have metabolisms that keep them skinny. The fact that they are skinny does not make their lack of exercise and their poor diet any better!

However, the way this is being done at Lincoln University – targetting people who are fat – is discriminatory. We’ve had studies show that people don’t actually have long-term control over their weight. http://www.nytimes.com/2007/05/08/health/08iht-snfat.5614611.html?_r=1 Our bodies change their energy use to reflect the amount of energy we’re taking in, leaving us with bodies about the same size whether we eat more or eat less. https://content.nejm.org/cgi/content/full/332/10/621

Dieting, we’ve seen, works in the short term but every study I’ve seen suggests that the vast majority of people who diet or make ‘lifestyle changes’ find themselves as heavy or heavier 5 years later. And that’s people who stuck with the change, not people who tried to just diet a bunch of weight off and go back to their old eating habits.

Furthermore, dieting is HARMFUL. A metastudy* by UCLA came to the conclusion that “The benefits of dieting are simply too small and the potential harms of dieting are too large for it to be recommended as a safe and effective treatment for obesity.” The study also noted that weight cycling – also known as the yo-yo effect of dieting – increases all cause mortality. I wonder if perhaps this increase is part of why we have this idea that fat people have higher rates of certain diseases. Among other things, this study connected weight cycling with increased rates of diabetes, cardiovascular disease, and strokes – all diseases we say are caused by being fatter. Maybe they’re caused by being past dieters more often than they’re caused by body size! (http://mann.bol.ucla.edu/files/Diets_don’t_work.pdf)

Okay, so I’ve talked a lot of the problems with the actual requirements…but what about the media coverage of the issue?

When the articles include pictures, they pull the usual trick of dehumanizing fat people. They are either turned away from the camera or their heads are not included in the picture. Often, they are ‘artfully’ out of focus. Also, they’re a lot bigger than the minimum size a person has to be to get forced into this new class at Lincoln University. A BMI of 30 is a lot smaller than most people think. For example, I was at a BMI of 30 not long ago. I wore a women’s size large. Maybe an XL if it was cut on the small side. In numerical sizes, I wore between a 14 and a 16. The people shown in the pictures I have seen so far are probably 8 numerical sizes larger, if not more.

That’s part of the media’s obesity craze, you know. They represent obesity as being UNBELIEVABLY ENORMOUS when really the medical definition of obesity includes people we’d think of as just being not skinny.

Yeah, according to BMI, I’m about halfway between ‘obese’ and ‘morbidly obese’. That’s a clothing size 18, for those of you who’re curious. Between an XL and an XXL. I also exercise daily and try to maintain good eating habits.

BMI is just a number. It tells you little more about health than age describes disability. At extremes, perhaps it tells us something, but in ranges just outside of ‘average’, it’s pretty damn useless.

Here’s the real twist I want to suggest. Even if BMI was an accurate measure of health, or we used an accurate measure of health to base our judgement on, it be not right to discriminate against people because of their bodies.

So here’s my question to you: why do we let our culture tell us that people have a right to judge the bodies of women, of PWDs, of fat people? Are you going to do anything about it?

*The Lincoln University faculty meeting minutes on their website confirm the existence of this new requirement:
The HPR 103 requirement can be satisfied/completed by doing any one of the following ways:
(a) Test out (earned a BMI of less than 30)
(b) Pass the “old” HPR 102: Lifetime Sports class
(c) Pass HPR 103: Fitness for Life
(d) Pass an approved “physical activity course” at another college (must be a transfer student to LU)

* A metastudy is a study that reviews the results of many other studies to see if conclusions can be drawn from the whole

…and yes, I’m aware I’m leaving out categories of people whose bodies are treated as public – people of color, homeless persons, politicians, GLBTQ folks (expecially trans people), and celebrities spring to mind. I’m limited here by the experiences I can speak from – a woman who is disabled and fat. I haven’t the ability to speak for those experiences I do not know, and I hope you will forgive me for not including them.

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