Tag Archives: intersectionality

Thyroid Cancer Treatment Affects the Abled, Healthy. Everyone Panic!

I have a little bit of a problem with people being handed down a mandate that insists they behave in a certain way or adhere to a certain set of guidelines for which they are not provided the means to do so. Usually, these rules or mandates are set by people whose lives the rules will never affect. I see it all the time here on the Garrison — rules that restrict the lives of military spouses set by Upper Brass who wear uniforms and sit in offices all day being briefed by people who don’t have to figure out how to tote around a couple of toddlers, diaper bags, strollers, car seats in case they might need a taxi while running to appointments, getting groceries, and picking up or dropping off older children at school without having a vehicle. I recently witnessed it in hospital policy regarding patients on long-term controlled substance use (something I should write another post about, eh?) — a pharmacist notices a patient prescribed a certain medication for a certain length of time, alerts a committee who sends out a generic letter triggering a “Single Provider” program without anyone actually meeting the patient involved.

Now, I read that a Congressional committee has noticed that patient being treated with radiation for thyroid cancer have been possibly exposing other people to, yes, radiation.

Well, let’s think about this for a moment. In the past, people who had thyroid cancer and who were insured and who were given this treatment were allowed a hospital stay so that the very strict regimen of sterility could be followed without putting extra strain on the patient. Then, someone got an itch and decided that it was just too costly to keep this up and that these leaches could just go home and do their own laundry every day. Not to mention, I am not sure what they are supposed to do with their garbage, how they are supposed to quarantine themselves from their families if they don’t have separate wings in their homes to live in, or how they are supposed to get home if they are weak from treatment and live alone.

The new regulations are supposed to discourage patients from taking public transportation, from staying in hotels, and from a whole slew of other things that really don’t take simple practicality into account. I think we can all agree that not exposing people to radiation is all around a good idea. I have no idea how much we are talking about, and the hyperbolic pictures of HAZMAT masks on the paper edition article I read didn’t help, but it must be significant if it is causing such a stir. Though, spokesman David McIntyre says it is “unclear” if the levels are harmful.

I remember getting a bone scan a few years ago and the tech had to wear a suit, and the dye they injected into me came in a lead tube. I was told I had to avoid metal detectors and public transit for a few days and was given a card to show that I was recently injected with radioactive substances. But I was a single mother, and a sailor, and I had no one else to help me out. Back to work I went, showing my card to security, who walked me through the non-metal detector way. I picked up my kid from daycare later, and drove myself home. I imagine that someone who has no support system who might be in a similar or worse situation would have to make similar decisions. So, I can see how people would disregard directions to go straight home.

Perhaps home is a day’s drive. Perhaps home is filled with young children and has only one car available. A hotel and train ride might be the only option, since the loosened restrictions mean that insurance will not pay for a hospital room that is no longer required. Or perhaps there is no insurance at all, and it was all a patient could manage to scrape up the cost of the treatment in the first place. There are so many reasons that these restrictions are not being followed, and I feel like this article, this committee, and this investigation are looking more at the people who are ‘violating’ the rules and less at the systemic problems that cause them to do so.

So, yes, those poor, unsuspecting people who have fallen victim to the carelessness of these cancer patients who have been so selfish to expose themselves to the world are who we should be focusing on. They are the true victims here, not the people who are trying to get healthy again, whose bodies are fighting cancer, and living with poison in them, and who are also now having to deal with the extra burden of a cumbersome set of rules of conduct for how to navigate live with a poison inside their bodies. The conversation is not, nor never is it, about them, but about the people around them whose lives are affected by their treatments, the ways those treatments impact their lives. All about the abled body, never the chronically sick or disabled unless it somehow affects the healthy and able.

Unless Congress is willing to establish a way to provide a place for these people to stay — all of them — I don’t see how a more enforced set of restrictions is reasonable. You can’t force a person to stay in a place they have to pay for against their will, and you should not be able to punish them because they had to use the resources available to them to survive.

These are just my own personal musings. I, of course, have no personal experience with these situations, but I grieve at the idea of restrictions that people might not be able to handle through no fault of their own.

I wonder if Representative Edward Markey (D – MA) and the Subcommittee on Energy and Environment are interested in hearing any of our thoughts on this matter while they re-think the policy.

Someone Get This Rock Off Of My Chest…

I read a post at Crazy Mermaid’s Blog recently that neatly summarized some things that I have been struggling with lately.

Friends and loved ones of those with a mental illness have a hard time understanding noncompliance with medication.  Why, they reason, if the drug helps control the symptoms of the mental illness, doesn’t the mentally ill person take the medication?

One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.

I linked it in my most recent RR, but it hit home so well that I really had to bring it back around here for some tossing around. I have been rolling some things around in my brain on my own like a toy surprise… the kind that can eat you up… and while the particular sitch that Crazy Mermaid describes doesn’t apply specifically to me, it is relevant.

We all have, I think, things in our lives that we face that create little fissures that attempt to pull us apart from any amount of happiness we might grasp onto in our lives. Those of us in the disabled community know that this kind of stress can be especially taxing on our resources as the two sides rub together, causing the tiny quakes and aftershocks of the impending snaps of what we can handle. Sometimes the aftermath of having to live on the fault line long enough results is losses we, as people, can’t quite handle with smiles on our faces, if at all.

These things might not all be catastrophic life situations, but sometimes they are. Perhaps it is, on one side of the fault, the choice to not medicate and along with it the constant shame and scrutiny from doctors, family, friends, and basically everyone you might know (or the lack of understanding of your continued symptoms from those “anti Big Pharma” friends who think you really can have it both ways). On the other, living daily with side effects that leave you with little to no quality of life. Crazy Mermaid listed a few fairly severe ones. I know some of my medications for other-than-mental illness conditions come with their own host of side effects that I had to consider, including vomiting, vertigo, extreme fatigue, and that is just to name some pleasant ones. They can sap your will to get out of bed. You have to weigh these options carefully as the ground trembles beneath you. Often, you don’t have anything  or anyone to cling to as you weigh your bleak options. What choice is it, really, sometimes?

Perhaps your choice is whether to accept a job across the country (or the world, in another country you have never even seen before) because it will provide for your immediate family. The other side of that precipice is the close-knit extended family you leave behind: grandparents and aunts and uncles who all had a hand in raising you, some of whom now could use your help as they get older. Their lives continue and you miss the daily events that used to be part of your daily life. The little things that mattered are missing from your life now as your support system is thousands of miles behind you. Their cycles of life don’t stand still because you have moved away. How do you make that choice, and what if you are a partner of someone who takes that job? Do you choose your partner or your family (and how do you choose)? Some of these answers might seems snap-crackle easy… but if you really break it down, they are many faces of the rock to look at. Do you choose financial or emotional security?

How do you make those choices? How do you survive the tremors of straddling the fissure while you weigh your options? When do the rock and hard place stop grinding against you to let you breathe for a moment so you can rest?

Recommended Reading for 14 October 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Crazy Mermaid’s Blog: Mental Illness Medication Side Effects

One of the biggest reasons for noncompliance is the side effects of the drugs. Especially for those with more severe cases, the side effects of strong doses of medication can cause horrific side effects. So horrific, in fact, that the patient makes the conscious decision to stop taking the medication to avoid those side effects. Living with the mental illness becomes more appealing than living without it.

Diary of a Goldfish (Thanks, Deborah, for sending this in!): Coming Home Undefeated

But it also helps that I am choosing to live with them now, because it is a sensible and practical thing which I actually want to do, not because I don’t have any other options. And it helps a very great deal, that this situation is not permanent. I think it would be a lot harder without plans for the future.

Deaf Echo: It Gets Better. It Really Does. (Thanks, codeman38, for the link!)

A few hours later, I received an email from some guy named Terrence, who told me he had just finished captioning the clip. I guess I’m a little slow these days, because I made no connection between Terrence and Terry.

That’s right. Terry, Dan Savage’s husband, took time out of his day to transcribe their video clip, figure out the program, and upload the captions so that gay deaf kids could have access.

Because. It. Is. Just. That. Important.

Penelope Friday: Read About Cost to the Poorest  of the Newest Welfare Reforms (Thanks, Rosemary, for the link!)

And explain patiently to me that if a family is earning £44000 then they don’t need child benefit. Even if it is the father who earns the money, and the  mother who may depend on the child benefit to have any money of her own (which yes, is often the case, even these days). When women have been able to use their years of claiming child benefit to count for contributions to National Insurance, and now will presumably lose that benefit alongside the present money.

Disability Scoop: SNL Offers Apologies For Disability Cracks

After repeatedly mocking New York Gov. David Paterson for being blind, “Saturday Night Live” used the governor’s appearance on the show’s season premiere Saturday to make amends.

During the show’s “Weekend Update” segment, the real Paterson made an appearance to take some jabs at Fred Armisen’s impression of him and set the record straight.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

But Really, It’s For Your Own Good…

Overarching Moderatrix Trigger Warning for Strong Language. And by “Strong Language” I mean that I swear a lot.

I pretty much knew that my life was going to get fucked up when my doctor had a Permanent Change of Station (PCS). I knew this, because according to the laws of karma to which I tend to adhere, shit was just going too perfectly for it to continue going my way.

Sometimes, gentle readers, I really just don’t like being right. Sometimes I do prefer to be wrong once in a while.

I would have liked to have been wrong when I had my appointment with Dr. Maybe. I have to see an Internal Medicine Specialist because they are the closest thing we have here to someone who can specialize in treating my condition. They are who I have to rely on to be my quarterback. When I called to make the appointment and explained that I knew that my regular doctor was PCS-ing and I would need to see whomever was replacing her, I was told that this doctor would have to do because he was not yet available. Fair enough. I made the appointment.

According to my pills (I have to count them) I would have just enough to make it that far. I can not run out. Let me repeat that. I CAN NOT RUN OUT. My quality of life bottoms out if I miss even one dose. I know this because sometimes I forget if I have taken my regular dosage or not, and I can’t take one “just in case” because “doubling up” would be worse than missing one. I know within a few hours if I have indeed missed that dose, because life begins to suck some major shit, and the fetal position begins to feel like too much effort.

I made the appointment.

Dr. Maybe greeted me. Told me within five minutes, and without really talking to me during that five minutes, or without really examining me, that I needed to lose weight and watch what I eat. Exercise and a diet change would help that, and that it would make the pain go away.

Just like that! The magical cure! The Bingo Card free space! Dr. Maybe has no idea what my diet at home is like (we make almost everything fresh, because we are very privileged to have a really great commissary and a local Korean market with fresh produce). He has no idea what my exercise routine is like, how much walking I have incorporated into my daily routine, how it makes me pass out from exhaustion at 1930 most nights and how it makes me weep with pain. How I try to swim once or twice a week, even though the Physical Medicine doctor and the Chinese Medicine specialist that I have consulted with both said I need to back off because it is causing more pain. Also, had he read my file, he would see that this condition began when I was active duty Navy, and in the best condition of my life, best shape of my life, and at the height of physical fitness, outperforming women two age brackets below me on Physical Readiness Tests just out of boot camp. It started when I was running seven miles a day on what I was told were just shin splints but were really stress fractures. It started when I had “Seeing Jesus” on a pain scale migraines that five days in the hospital couldn’t solve, but my commander insisted that I be out running again two days after surviving.

So, I’m gonna go with, no. The weight loss will not magically take the pain away, and my diet is just fine. What he can get me is a nice re-hashing of an old eating disorder battle, some nice body dismorphia, and a scorching case of shattered self-esteem. Not to mention no chance whatsoever that I will ever make an appointment with him again. Ever. Dr. Maybe is definitely a Dr. Won’t.

The pain was there before the weight. If diet and exercise is your answer, you are solving the wrong problem, doc. Fuck you very much.

I did receive a nice letter in the mail today from Medical. The Deputy Director of Clinical Services would like me to know that she has reviewed my file and decided, that for my own safety, she noticed that I have been receiving too many controlled substances from too many different providers over the last few months. As a result, I must now get all of my prescriptions written by Dr. Pre-Approved, and if she is not available (and since she is pregnant, as I found out, this might be a problem soon), I can petition to have Dr. Also Pre-Approved write them and have it approved on a case-by-case basis. These doctors are presumed to be not my primary care managers, and my PCM must get all of my scripts approved through one of them (in that order) before I can have any scripts. Ever.

Now, it already takes me almost 30 days to make any appointment with a doctor I see regularly, and this new rule is basically forcing me to somehow fit another appointment into my schedule, balancing the 30-day schedule. I am only allowed two of my meds in 30-day allotments due to hospital policy even though TRICARE approves them for 90-days at a time. Fun. Scheduling is tight. The schedule doesn’t allow appointments to be booked more than 28 days out, and most providers are booked 30 days out already. I am already having to call daily to find out if I can even schedule appointments at all.

Also, over the last two years — repeat for fucking emphasis — TWO YEARS NOW the same doctor has treated me and written all of my scripts. I have not had any prescriptions written by any other doctor during the time I have been here in Korea with the exception of the time I sprained my ankle and was seen in the emergency room. Now, my doctor PCS-es and four days later this letter is drafted now that she is no longer here to advocate for me? Raise your hands if anyone else finds that odd or convenient.

I go immediately to the hospital’s Patient Advocate, who is supposed to liase between patients and medical staff. I explain all of the above about as calmly as I can and I am somewhere between barely controlled panic and simmering rage, with my partner filling in what he can. I ask to see what from what information they have based this claim. She asks me about two referrals I’ve had in the last two weeks, both made by my departing doctor (the referrals are all signed by her). Neither one of them gave me controlled substances, and I sought out their care to avoid increasing my narcotic usage specifically to avoid any impression of drug seeking, even though my use of controlled substances is very low, lower than even my departing doctor was recommending. I even try to ignore pain to avoid taking extra meds, which we know doesn’t work for chronic pain, but I live in a fairly scared state. The military deploys doctors often, and it is hard to make the switch easily for chronic pain patients. I have to walk a careful line. I wouldn’t even let the Physical Medicine doctor, who ordered my TENS unit (at my urging) and tried acupuncture, refill my pain meds because I didn’t want this exact thing to happen.

I demanded to speak with the Deputy Director who made this call. To confront her directly. I am told that she makes these calls to protect patients like myself from becoming addicts. I point out that first meeting with a patient and reviewing cases — speaking to humans — could avoid the harm such a thing as this situation is causing. Throwing a targeted policy at a person you don’t know could potentially harm a patient and is adverse to good patient care, and violates my rights as a patient. In my case, I was already doing, in theory, what is being asked of me. I simply want the chance to choose the doctor for myself and to have the doctor who treats me be the same doctor who prescribes my meds. Dr. Also Pre-Approved was the next doctor recommended to me, by my departing doctor, to try. He was the doctor briefed on my particular case. This should be my choice to make, irrespective of what list he falls on. Some arbitrary person who knows nothing about my case is not better suited to choose this than I am.

I demanded to have this letter removed from my file. While the PA insists that the language is ambiguous and doesn’t call me a drug seeker, I adamantly insist to her and point out all the ways that it in fact does, and explain why this will make my life more difficult. Why it places more burden on me. Why it creates more hours in the Second Shift for the Sick. How it has already created mistrust between patient and doctor for me, leaving me in severe amounts of “super legit” pain for hours while a Chief Corpsman (HMC) read through my record, one page at a time, to make sure I wasn’t seeking drugs before coming to the novel conclusion that I was a chronic pain patient in — wait for it — chronic fucking pain.

It is little things like this, little notes printed off by someone who has never met a patient, signed by someone too important to give a damn and too busy to be arsed to make time for people skills, that make life nigh impossible for PWD every day. We are not trusted with our own care. We are told how things are going to be, who is going to provide it, and how often it is going to happen. We are sideswiped with half-truth information, and always, ALWAYS thought the worst of.

We are vulnerable.

I guess this is why they have to crush us with these ableist policies.

They are, after all, for our own good, right?

Right?

Recommended Reading for 27 September 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Brilliant Mind, Broken Body: Emergency Fail (Thanks for the link, Kali!)

The ER supervisor said I had the option of going elsewhere.  Bullshit.  When you’ve been brought in by ambulance because you’re barely able to stand with tons of assistance, you don’t have the option of going somewhere else.  Especially when somewhere else is on the far side of the city.

SexAbility: Decision Made (Warning: Some images and content NSFW) Thanks to K for the link!

So I’ve finally decided to shut down SexAbility. I know folks have said before, “keep it up, it’s a good reference. But honestly? It’s more trouble then it’s worth. And truth is…

Crozier Center for Women: Jon Stewart’s Rally to Restor Sanity (Thanks to Monica for the link)

The implicit message behind the “Rally to Restore Sanity” is that individuals influencing America’s current political climate are “insane.” Crazy. Wacko. It’s Stewart pointing at a picture of Beck and circling an index finger around his ear. And it pisses me off.

Australian Broadcasting Company: Mentally ill “falling through the cracks”

“The number of consumers who’ve come to us and found that they just can’t get on, they can’t communicate with the agencies and they’re left often in great poverty, in great mental concern,” [Mr. Asher] said.

McClellan: Woman’s disability not evident to judge

Attorney Jeffrey Swaney was at the Social Security office representing another client when Marcella’s case was called.

“I was sitting in the waiting room when they called her. I knew it was an appeal, and I remember thinking, ‘How could this woman have been denied?’ You could see she was profoundly disabled,” he said.

Later that afternoon, Swaney got a phone call from Lisa. She had seen his ad in the Yellow Pages about Social Security disability claims.

“She said her aunt had just had an appeal and had been denied and she started describing it, and I said, ‘I was sitting right behind you.'”

So Swaney took the case. He said the problem was a lack of medical documentation.

If you’re on Delicious, feel free to tag entries ‘disfem’ or ‘disfeminists,’ or ‘for:feminists’ to bring them to our attention! Link recommendations can also be emailed to recreading at disabledfeminists dot com. Please note if you would like to be credited, and under what name/site.

Dear Imprudence: Just Be an Adult Already!

Here’s some nostalgia for ya, gentle readers!

My dad, who was completely AB for the record, lived alone in the home I now own, and for a good portion of my life had many of his needs taken care of by members of his immediate family. My Grammy did most of his laundry, unless my aunt happened to be there doing laundry on Dad’s laundry day. My aunt, who was a book keeper for the family business, handled Dad’s bank account; she paid his bills for him back in the days prior to auto bill pay and signed most of his checks (most of my birthday cards suspiciously looked as if they may have been signed by her as well, to this day I can not tell their writing apart in some instances). It isn’t that my Dad couldn’t take care of himself or wasn’t an adult, but that they just simply did it for him after my parents divorced and he was living alone. Of course, Dad did things in return for Grammy, like grocery shopping and yard work after she wasn’t able to do it for herself…but that is another story for another day. Some people talk about ‘love languages’, and this is one spoken by this side of my family.

I don’t know that my aunt resented having that responsibility. I don’t know if any of Dad’s other siblings, all married with kids, resented this arrangement. I don’t really care, because it was something that was worked out between them, whether spoken or unspoken. There was, more than likely, a lot of traditional and gendered reasons why this arrangement took place. It also maybe had a bit to do with my grandmother being widowed, my Dad being her only child that was single and living alone, and who had the time to spend with her, taking her to Senior Breakfasts and stopping in for coffee in the morning after his night shift. It worked for them.

Perhaps this is why, when I read this letter sent to Emily Yoffe, AKA Dear Prudence, at Slate Magazine which was passed on to me by s.e. smith, I am inclined to find the myself rolling my eyes at the letter writer (emphasis mine):

Q. Reston, Va.: I have a 30-ish sibling with a health issue that has prevented him from working for the past four years. My parents support himhis own townhouse, car, new clothes, food, medicine, etc. They do everything for him (laundry, groceries, errands, etc.) Although his illness is real, he also spends a lot of time on his social life (out on the weekends, going to bars, etc.) and dates. In contrast, my wife and I (who live 10 minutes away) are trying very hard to stay afloat in this economy with small children, a house we paid for on our own, cars we paid for on our own, etc. We don’t receive much help (even babysitting). I can’t help but feel as though I am penalized for being functional, and I feel a great deal of animosity toward my family. Now, my parents are starting to ask me to help out my “poor” brother more, when my own family is already stretched incredibly thin for time/money. If it were up to me, I’d tell my brother to start acting like an adult and do more for himself. My parents would be horrified and upset. Any advice for getting through this tactfully?

Yes, yes. My brother has more than me! And he didn’t have to work for it! It’s not fair! (Sorry, I had a flashback to… well… my whole childhood.) I would love to be him, with all the damned free time and cool stuff and the devotion of my parents!

Too bad that the special perks come with strings. In my Dad’s case it was solitude and possibly depression, which I won’t pretend didn’t show in his demeanor. In the case of Reston, Va.’s brother, it comes with unspecified (thankfully he had the tact to leave this personal info out) medical conditions. We really don’t know the extent of them. We don’t know how much mobility this person has, how it impacts his daily life, if the reason he can’t work is due to pain, or what the disability is. This is mostly because it isn’t our damned business, but the point is that the grass isn’t always greener. Sometimes it is just sod.

Our good friend Reston, Va.’s brother isn’t being a Good Cripple, either. While his parents are doting on him for whatever their personal reasons are, he has the nerve to want to have a social life. He even goes to bars! We all know that bar ALWAYS means loud, rowdy club where every person is inebriated from imbibing in copious amounts of cereal malt beverages until wee hours of the morning, and never a quiet place where people can sit, talk, perhaps enjoy quiet music and a couple of cocktails or just a sandwich and the [insert sports team] game. There is quite a huge difference.

Reston, Va. wants to define the terms of what adult behavior is, and the hard truth is that “adult” doesn’t mean the same thing for every person. Having 2.3 children, a house, and a car while punching a time clock every day isn’t the universal litmus test. I read this letter as more of a cry that Mummy and Daddy aren’t babysitting more often so that he can go out once and a while or aren’t helping him with expenses than anything else.

Needless to say, I was not impressed with Prudie’s answer (again, emphasis mine):

A: If your brother is capable of hanging out at bars and going out on dates, I’m wondering why he’s not capable of doing his own laundry and getting his own groceries. It sounds as if despite his real problems, your parents are only exacerbating his dependency. They’re probably worried about when they’re no longer around and are trying to line you up to fill in for them.

You need to have a talk with your parents about the present and the future. Explain that despite his illness, it would be beneficial for the entire family if your brother took more responsibility for himself. You can say you love your brother, but you don’t have the financial or emotional resources to take care of him, and you in fact think more energy needs to go into helping him be a productive member of society. If they don’t want to hear your message, that’s their business. But you need to make sure they hear yours that you can’t take him on.

I am irritated to no end the way that Prudie here equates the ability to do laundry and grocery shop with being a “productive member of society”. Also, the way that it is obvious that one activity is the same as another, and that obviously if the brother is able to do one, since she can so capably glean from the letter exactly what the brother’s limitations are, he must be able to do all the others. Clearly, being disabled means that we must sit at home, in the dark, crying about how miserable we are if we are to ask anyone for any kind of help.

Prudie might be shocked to hear that PWDs are not all forcibly sterilized anymore (though it still happens) and that many of us manage to *gasp* have sex lives. Some of us manage to accidentally enjoy ourselves with full, meaningful social calendars.

But that doesn’t negate our need for accessibility, assistance, and actual empathy. Which she lacks. But based on the letter I see her, she won’t be lonely.

I fully support this letter writer setting boundaries for what he is willing to take on with regards to the care of his brother, especially since, honestly, it seems that he is more worried about what he is not getting that is equal to or greater than his brother’s benefits. I wouldn’t want to be cared for by someone who didn’t want to be part of my life or who would begrudge me having something that gave me moments of happiness. I don’t want people like that close to me. It is why people are afraid to have Facebook pages or interact publicly: the policing of what PWDs should be allowed to do is so rampant that they even lose benefits because they aren’t disabled enough in public. Boundaries are important on both sides, though, to protect everyone, and Reston, Va. is under no obligation to hurt himself or his family financially to care for his brother.

Yoffe was so off base in her response, though, that she was holding a puck when the first pitch went out.

Also worth noting is that has seemed to leave the brother out of this conversation altogether. Everyone seems to want to talk about him and his needs, how helping him will affect them, but I see no mention of talking to him about what he actually needs or wants. It is completely possible that Reston, Va.’s brother would prefer to get his own groceries or that he doesn’t need his socks folded, it is just that no one has bothered to ask.

Turned out that during all those years my Dad was able to balance a checkbook after all. He let my aunt do it because it made her feel like she was taking care of him because he was alone, since my Dad’s family is fairly close-knit. They did things like that for each other, not because the other couldn’t do them, but because they cared for each other, and that is how some people show it.

Recommended Reading For 16 September 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Guiding Golden: Service Dogs as a Last Resort (Thanks to Sharon and Barnum for the link!)

There should be no correlation between a disabled person’s willingness, or lack thereof, to experiment with various options and others’ assessments of wether that person’s decision to use a service dog was made appropriately.  In the same spirit, a person who decides to use a service dog after alternatives have proven ineffective, should not be viewed as any more validated in their position than one who simply decides that the medication is not for her.

Planet of the Blind: No Wonder Blind People Have So Much Difficulty Getting Jobs, Have You Checked Out Their Computer Situation Lately?

Like my friend William Peace the administration at Iowa has come to think of me as a “bad cripple” who is simply a thorn–largely because I keep insisting that we need to have accessible campus buildings and a dignified disability culture that stands for true inclusion. Call me a thorn if you must. I simply believe that 20 years after the ADA people should be able to work and go to the bathroom by golly. When I think of how low my utopian dreams have fallen I could just cry.

Wibbly Wobbly Ramblings: A Serious Case of Discrimination against Students with Disabilities

Being forced to take a full course-load despite a diagnosis that says otherwise, forces students with disabilities to play the system and risk mental stress and burnout, to which their studies suffer and creates for them the issue of repairing the damage to their GPA.

Refusing to play the system, and, following a diagnosis, being considered part-time limits a student who cannot handle working at a job to support oneself at the same time as going to school.  It restricts students from grants, services, and the benefits of a full-time student.

Healthy Place: Sorry, Too Busy Panicking to Breathe

Right now I’m doing a little bit of all of the above. Who said multitasking’s just for the highly efficient? It’s one of the few skills that comes free as part of the anxiety package (No steak knives I’m afraid. They take away the sharp things when you shake as much as I do). If you’re panicked enough, you can do 5 million things at once. Adrenaline is just homemade speed.

Comment is free: Unemployment is no “lifestyle choice”

After 18 months, the job centre was forced to pass me on to an “Employment Zone” – a private company paid by the government for every client it got into work, suitable or not.

It offered nothing that I was not already doing: I have internet access and know how to fill in forms and write CVs. My “adviser” was the Scots incarnation of League of Gentlemen’s Pauline, who relished humiliating people better qualified than herself: “We have to find ways of hiding the fact you’ve got a PhD,” she said. I wondered how she would explain away six years. I told her that I had been applying for jobs to which I was suited in skills. She replied: “If you were suited to them, you’d be getting them, wouldn’t you? Try cleaning or call centres.” Fortunately, just as she was demanding that I come in twice a week (on pain of stopping my benefit), the temping agencies with which I was registered began coming up with short-term work in academic administration.

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Dear Imprudence: May I Burden You?

Gentle Readers!

I love advice columns almost as much as s.e. smith, and I especially love ou’s deconstructions of them, so I get pretty stoked when ou passes them along for the rest of us to take a crack at them.

This one comes to the the New York Times’ Social Q’s from a mother who is getting a little bothered by the imposing looks of strangers when they take her daughter out in public:

Our 19-year-old daughter is disabled. She’s ambulatory, but walks with an unusual gait and is cognitively disabled. Wherever we go, people stare at her. Not glance, they stare. Recently we were out to dinner, and the woman at the next table couldn’t take her eyes off her. I wanted to say: “This is not dinner theater, and our daughter is not your entertainment.” But I didn’t. Most times, I just stare back and hope the gawker gets the message. Is there a better way?

Paulette Mann, Rye, N.Y.

I get extremely uncomfortable and irritated with people who can’t manage to be polite and respect the privacy of other people. “Othering” is a concept that riles me pretty good, and othering people based on circumstances beyond their control is right up there on my list of things that will get you “unfriended” or “unfollowed” in a keystroke. Beneath that is treating people with disabilities as if they do not have a right to privacy when they are in public with you. As if their existing in a manner that you find abnormal is somehow negating their right to eat lunch without you staring at them. Or asking them awkward questions about their condition. Or talking about them with your friends as if they aren’t right there.

I can only come close to imagining what Ms. Mann’s emotions must roll through when she wants to protect her daughter. How it must feel to want to shield her from all that uncomfortable awfulness. She is right to react the way she does, and to feel the way she does. Most of us with children want to do whatever is in our power to protect our children while we raise them to independence (or even in this case, possibly she doesn’t live at home and they are just enjoying some time out together). Here, Paulette is asking for advice on how to help with that deflection. People often turn to advice columns because it seems that they have exhausted other avenues. I applaud Paulette, actually, for taking this extra step, because I know how it feels to want to protect your child when it feels as if you can not.

I feel like the response that she received was anything but helpful to the situation that Paulette Mann drew out for us. Let’s have a look:

First off, let me apologize to you and your daughter on behalf of all the Lookie-Loo’s out there. That they don’t mean any harm is beside the point; you shouldn’t have to deal with them.

Well, Philip Galanes starts off OK. He sure got that right! *searches for cookie*

But now I’m going to impose another burden on you (as if your family weren’t shouldering enough of them). The next time you encounter a rude rubbernecker, like the wide-eyed woman in the restaurant, just smile and ask: “Would you like to meet our daughter?”

Yes. That sounds like it is exactly what she wants to do! Paulette Mann wrote to you, saying that she wants people to leave her daughter some privacy, and you want to have her now force her daughter to meet strangers! Here! Shake her hand! Come over to our table, invade her space and maybe you can ever startle her and frighten her by being a stranger! Without knowing more about this young woman, all I can say is that this is terrible advice to give to a mother who is asking for a police way to tell a stranger to piss off while her family is trying to enjoy a nice meal out. Without the Britney Spears following (a woman in another group of people I feel have invaded privacy).

Not to mention, let’s place more burden on a caregiver (because, if I don’t talk about the caregivers someone is going to run in here and call me insensitive). A parent needs another burden, amirite? As if we are not keenly aware of all the burdens we carry as parents. All we are expected to bear as we guide a child to independence. As a parent of a seemingly AB/NT child, I can not begin to understand what it is like to have that extra layer of responsibility raising a child with disabilities, but I can understand parenting from a disabled parent perspective. The pieces are different, but I am willing to bet the energies even out as they fit together similarly. “Impos[ing] another burden” is just what this mother needed, for sure. Smashing advice. Brilliant.

Oops. Was that sarcasm?

My hunch is when they shake her hand, they’ll begin to see her as a human being — with feelings and everything — and not some curiosity. Maybe then they’ll show you some of the respect (and privacy) you deserve.

It’s asking a lot, I know. But it may make a difference.

I don’t know that the best way to demand privacy is to invite others to invade it. I don’t know how that would affect her daughter. I don’t know how that would affect Paulette’s energy stores. I don’t know a how to do proofs on a Geometry test.

What I do know, is that, as a parent, this advice would have really felt hollow and a tad overwhelming. I don’t know that Galanes really had a handle on what he was suggesting. I can not imagine introducing a child to everyone who stares at her, and I can’t imagine that it would be a positive situation. Perhaps I am way off base, and I am willing to admit that if I am wrong. My own Kid would not enjoy that kind of invasion. Without knowing Mann’s daughter I couldn’t say for sure. But I am willing to wager that it isn’t a burden that Galanes had any right to place on her at all.

A special thanks to bzzzzgrrrl for the link to this letter!

Recommended Reading for 06 September 2010

Warning: Offsite links are not safe spaces. Articles and comments in the links may contain ableist, sexist, and other -ist language and ideas of varying intensity. Opinions expressed in the articles may not reflect the opinions held by the compiler of the post and links are provided as topics of interest and exploration only. I attempt to provide extra warnings for material like extreme violence/rape; however, your triggers/issues may vary, so please read with care.

Galt Museum Blog: Making a Difference (Thanks to Penny from Disability Studies at Temple U. for the link!)

As I called her earlier this week to book a class, she related the following story to me.
For years, Blanche has told students about her limited vision and says that if they see her out and about in the community, they should come up to her and say oki (Blackfoot for “hi) and introduce themselves because she won’t be able to see them. In August this year Blanche was at Wal-Mart shopping with her son and grandson. As she was sitting there, a young girl walked past her, stopped and then walked towards her with her hand-outstretched. When she got in front of Blanche she said “oki” and then “oki, Museum Lady.” She was with her young brother and turned to him and said “this lady works at the Galt Museum. You and me and Mom and Dad should go and visit her there one day.”

Public News Service: Disability Activists: Dump the Pity

For 60 years, Jerry Lewis has hosted the Muscular Dystrophy Association annual Labor Day telethon. And for about 20 years, one of “Jerry’s Kids” has been at odds with him over the way the money is raised.

Mike Ervin appeared on the telethon when he was six years old. Now he’s a writer and disability rights activist who speaks out against the telethon because he claims it promotes stereotypes of people with disabilities as objects of pity.

Deafinitely Girly: Things my ears do instead of hear!

Isn’t it amazing how my ears are so utterly useless at their originally intended purpose, and instead able to tell me when someone loves or hates me, and when danger is nearby?

Did they miss the memo about actually having to hear, too?

Pipecleaner Dreams: Special Exposure Wednesdays

Well, for many reasons, Ronnie does not like DeafTalk at all. But, yet another interesting turn of events happened at the doctor’s office. Ronnie was on a standard size exam table. The DeafTalk machine was positioned in front of him. Only problem – the interpreter could only see Ronnie’s knees.

VictorVille Daily Press: Change in ADA regulations concerns local service-animal owners

That will all change next spring when service rats, cats, birds and some others will be disallowed under ADA amendments recently signed by U.S. Attorney General Eric Holder. The new rules will allow canines to continue to be used as seeing eye dogs and to alert seizures, but dogs will not be allowed to be used as service animals for emotional support. In recent years, dogs have helped bring normalcy to children with autism, soldiers returning from war with post traumatic stress disorder and more.

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Pondering Illicit Usage of Accessible Spaces…

I was driving back from dropping Kid off at school today, and I noticed that a delivery truck at the public library was using the accessible parking and accessible ramp as parking and loading dock space…

We have been having some conversations about accessible parking spaces and the policing of those spaces, and the blocking of those spaces and/or using of those spaces by persons who do not need them or have the right to them.

What thoughts, have you, gentle readers, on this particular use of these spaces? I have seen this in other places around our base, though I can’t recall if I have seen such a thing in other non-base places, because I have just begun to notice them (perhaps this is a product of some kind of privilege of mine). Even if it is early morning, should delivery vehicles be taking advantage of these spaces like this?