Category Archives: intersectionality

Recommended Reading for 07 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.

Deeply Problematic: Paperwork & homework, anxiety & ADD: institutionalized and internalized ableism

Paperwork is a form of institutionalized ableism. Paperwork keeps folks who have issues with anxiety, ADD, and likely other disorders from living, from working, from getting the care we need to treat that which disables us. It makes paperwork a daunting, insurmountable task – and its incompletion perpetuates guilt and sends it further away from actually getting done.

Wired.com: Exclusive: First Autistic Presidential Appointee Speaks Out (Thanks to reader Sara for the link!)

Wired.com: Much of the national conversation about autism in recent years has centered around statements by celebrities like Jenny McCarthy and Jim Carrey who claim that autism is caused by vaccines and other environmental factors, and can be cured by things like special diets, behavioral interventions, and alternative medicine. Is that the most productive conversation we can be having about autism as a society?

Ari Ne’eman: No. There’s a disturbing lack of attention to science in that conversation, but the problem goes deeper than that. What we have is a national dialogue on autism without the voices of the people who should be at the center: those who are on the [autism] spectrum ourselves. Instead of focusing on things like quality of life and civil rights, the autism community has been distracted by narrow questions of causation and cure.

Going back to the dark days of Bruno Bettelheim and “refrigerator mothers,” the focus of the conversation has been on placing the blame for autism, and on trying to make autistic people something we are not and never can be: normal. This focus on a cure has prevented us from actually helping people. There’s been a lot of progress in the disability rights movement over the past 20 years, but people on the spectrum haven’t benefited from it because those representing us at the national level have been focused on causes and cures.

We need to stop making autism advocacy about trying to create a world where there aren’t any autistic people, and start building one in which autistic people have the rights and support they deserve. That’s the goal of groups like ASAN, Autism Network International, and of the neurodiversity movement as a whole.

Orlando Sentinel: Chartari Jones: Sanford girl says bullies ‘spit in my hair’

The Sanford girl whose parents said was teased by bullies on a Seminole County school bus in September opened up Monday about her ordeal on national television.

“They would poke me with pencils, call me names and spit in my hair,” Chatari Jones told NBC Today Show host Matt Lauer while wiping tears from her face with a tissue.

WHERE’S LULU: “This American Life” Spotlights “Crybaby” ADA Lawsuit Filers

The episode starts with the extremely-unpopular-with-ablebodies Tom Mundy, who makes a living suing ADA-violating businesses in Southern California. The show’s producer mentions how in California, disabled people can make $4,000 by suing a business for not being up to code. A lawyer who represents business owners estimates Tom has made half a million dollars in just three years.

The producer then drops the bomb that most people who read this blog know all too well, but that most TABs don’t realize: The ADA is not enforced. The government doesn’t even pretend to enforce it – there is no agency (federal, state, regional, or otherwise) to monitor whether or not businesses are complying. So it’s up to people like Tom Mundy to sue in order to gain equal access.

I’M SOMEWHERE ELSE: [No Title]

First of all, why do people have to have recent documentation? Have there been many cases of developmental disabilities, like ASD, just disappearing? Do people with for example dyscalculia just suddenly get better, and then continue to try to get accommodations because they’re just a shitty person who wants to get a leg up on everyone else?

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.

Veronika Decides to Die: A Very Special Lesson in Living Your Life Right

Book cover for Veronika Decides to Die by Paulo Coelho. A mostly blue cover depicting a snowy scene with a blurry shadowy figure of a (presumably) woman walking on the snow among some blurry shadowy trees.Every now and again I come across a book that I enjoy enough to read repeatedly. I have several of these on our bookshelves at home. The Harry Potter Series is an annual read for me in my YA set. The Kushiel’s Legacy series is another, in my Not YA set. There are, though, few books that I have encountered that I have read and enjoyed at different periods of my life when that have meant different things to me. Particularly because I have gone through some dramatic life shifts, and because those shifts have given me some fairly fundamental changes in how I view the world, politics, religion, human nature, and mostly myself as well.

One of those books, which has had a great impact on me and which I have enjoyed in immensely different ways at hugely different periods of my life, partly because of the way the author’s experiences are painted into the word work and partly because of the story itself, is Paulo Coelho’s Veronika Decides to Die. Veronkia was recommended to me by a friend who has in the past recommended other books that I have always enjoyed for one reason or another (including The Hitchhiker’s Guide and I, Lucifer, and who also gifted us with a set of 4.0 books for our wedding — you will either fully appreciate that or you won’t), and for me and the way I chew novels for breakfast was a quick read. It took me the better part of a morning. That friend knew that I sometimes practice what is commonly referred to as astral travel, and what I sometimes more commonly lump in with lucid dreaming (they feel the same to me) and thought that I might find the scenes about this topic interesting. I did. In an odd and slightly disturbing way.

In fact, that is how I would describe my first foray into Veronika. Odd and slightly disturbing.

So: Spoilers Ahoy and also a Trigger Warning for descriptions of attempted suicide, a potentially upsetting rape-like scene, and descriptions of mistreatment in a mental hospital.

Veronika Decides to Die (Veronika decide morrer in the original Porteguese) is set in Ljubljana, Slovenia, tells the story of Veronika (I suppose you could have parsed that one out), a 24 year old young woman, who has decided that she has reached the height of her life. She had determined that from this point that life and beauty will probably get no better, and out of no real sadness or unhappiness she has made, in her opinion, the perfectly rational decision to end her life. Her incompleted attempt on her own life winds her up in a mental institution called Villette, in Slovenia, where she awakens to the news that her attempt has irreparably damaged her heart; she is told she has only days to live.

The story is supposedly based on Coelho’s own experiences in mental institutions in his youth where his parents send him for refusing to acquiesce to their demands that he become an Engineer instead of a writer, or at least something useful and respectable. Coelho’s refusal to become something productive proved, to them, that he was “mad”. One of the central themes in Veronika is the idea that collective madness is really sanity, and that sanity is really in the hands of the beholder. Essentially, if everyone in a room, or even a kingdom, believes one reality to be the truth, except for a single person, irrespective of that one person’s authority (the doctor, a king, etc.), then the sanity of that authority is irrelevant, because it is the collective reality of the masses that matters and thus becomes the rational way of thinking.

The way you view this theme really depends on your views of people’s right to define their own mental abilities. I viewed this book through two very different lenses in my life, one where I was fighting my own mind, and one where I was coming to terms with myself instead; a period of self-acceptance rather than self-loathing (still working on that last part). Veronika depicts a mental institution that both suppresses people’s free will, yet allows them to stay beyond the requirement that binds them if they choose to do so. Don’t be fooled, however: There are still many things going on, such as forced medication, forced inside and outside time, and even a scene that describes, very graphically, a treatment of induced insulin shock that sends a patient into what she calls a state of astral travel. The balance of treatment of human dignity with that of the way that disabled people are often treated as objects to be shuffled around and poked and strapped down is troublesome at best, and hard to read without a watery field in front of you at… well my worst. Maybe not yours.

Very troubling to me is the overarching theme, embodied in Dr. Igor, the head psychiatrist at Villette, who has decided that Veronika, a beautiful and vibrant young girl, is wasting her life, and must be taught a Very Special Lesson. So sad, is it, that she has decided to throw away youth, and beauty, and that she is ignoring all that life must be waiting to hand her. He, obviously, knows her life better than she, and is uniquely prepared to teach her that she is, indeed, Doing It Wrong. R-O-N-G, even. How good of Dr. Igor, this man, to come and rescue this poor, helpless, and foolish girl from what might have been the worst mistake ever.

Dr. Igor has this theory, see, that people, like a defibirillator paddle on a heart, just need a jump start to avoid the heart attack that is this mental illness, something he calls “vitriol”. He believes he can shock people into appreciating life and just help them realize that they can simply buck up and learn to love life again.

I don’t want to spoil the book for you, gentle readers, if at this point you are still with me, so I won’t go into detail about how Veronika becomes not only the tool by which he provoke many of the residents of Villette, including Eduard, a patient diagnosed with schizophrenia who becomes a love interest for Veronica, and Mari who has frequent panic attacks. I also won’t tell you how Veronika learns her own Very Special Lesson, because she is not left out of that condescending rule of Dr. Igor who swings his diploma like a true Patriarch. She suddenly sees that she is free from the rules of a society that has given her a laundry list of expectations, and that she now may act like the “crazy” person that she is being treated like. No one believes that she just felt like ending her life, for no particular reason, so she may as well act the part. She starts to see the comfort that is Villette’s lack of accountability.

I think this book speaks strongly to the way that we dehumanize and mistrust mental health patients and people living with any variety of mental illness. Even if I don’t always appreciate Coelho’s delivery.

A caution to you, gentle readers: There is a rape-like scene, depending on how you read it (the first time I read the book, I did not read it this way, the second, I certainly did). Veronika performs a masturbatory act in front of a person who neither consents nor denies consent. It is fairly graphic in description, and it very much made me uncomfortable, no matter how “freeing” it made Veronika feel.

The book was made into a movie that I have not yet seen, as it didn’t appear at any theatre anywhere near where I was living. It stars Sarah Michelle Gellar as Veronika (a stellar choice, IMO), and David Thewlis, most well known to me as Professor Lupin from the Harry Potter series, as Dr. Igor. Should I get the chance (I love you, NetFlix, for coming to my APO!), I may revisit the review.

Who out there, gentle readers, fellow contributors, has read Veronika? Thoughts? Popcorn? Tomatoes?

Book Cover Image: Wikimedia Commons

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 30 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.

Can you believe it already the end of September?

The Vibrating Square: Respect (Sent in by The Untoward Lady)

But it’s not about intent. It’s not even about the very real impact that such language has on people like me. It’s not even about the fact that what you said is hurtful.

Brilliant Mind Broken Body: After the Separation (Glad you are well again and home, Kali)

But I went through 2 1/2 days of my service dog not wanting to have anything to do with me, and that was their fault for separating us.  I went through more pain at the hospital, I was alone, and I had to deal with days of my service dog ignoring me.  If it weren’t for them, all I would have had to deal with last week was a nasty stomach virus.

The Consumerist: Continental Sorta-Apologizes For Not Allowing Service Dog On Flight

Jessica says Continental offered her a couple of coupons to make good — one for 10 percent off of a flight and another for a free drink. She says she’ll need to give them to a friend because she’s given up on flying for the time being.

Disability Rights California: The California Memorial Project

The perfect last day of a California summer drew a collection of advocates, supporters and community representatives to the Stockton Rural Cemetery. The gathering honored hundreds of people who had died anonymously while residing in the Stockton State Hospital, established in 1851 as the state’s first “asylum” and closed in 1996.

Disability Books: Stevie Wonder Calls for International Action to Enhance Accessibility for Visually Impaired Persons

World-famous singer-songwriter and UN Messenger for Peace Stevie Wonder called on the international community to take action to enhance accessibility for all those with physical disabilities. Speaking at the opening of the annual meetings of World Intellectual Property Organization (WIPO) Assemblies on September 20, 2010, he challenged delegates to conclude an agreement on improved accessibility to copyright protected works by visually impaired persons (VIPs) within a year.

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.

Tell The Discovery Network that their transphobia is unacceptable

Late last week, PinkyIsTheBrain on tumblr began a campaign to bring attention to the new Investigation Discovery show “Who the Bleep Did I Marry?”, which equates someone being trans* with being a serial killer, a con artist, or a bank robber.

[Note: If you’re unfamiliar with Tumblr, it can be a bit hard to navigate. “Conversations” or comments or follow-up tend to be nested.]

Transcript:

Music plays in background: “Love and marriage, love and marriage”

The video opens on a scene of a wedding in an idyllic location surrounded by trees with an arbor of flowers. The camera zooms in on the bride, who turns and says:

(Marriage officiant in the background): Join this man and this woman in holy matrimony.

First Bride: Five years from now, I’ll find out that he’s a bank robber.

The camera cuts to a different couple, walking under a portico with their backs to the camera. The bride turns to the camera and says “Serial murderer.”

A zoom in on another couple, standing like they are being photographed with their families.
Third Bride (loud whisper): Russian spy!

Another couple, cutting a cake.
Fourth Bride: Cheater. With three other wives.

Another couple, surrounded by a crowd, the bride sitting on a chair while her husband kneels to pull off her garter.
Fifth Bride: And he’s a… a she.

(Gasps)

(Kissing noise.)

We cut back to the original couple, kissing at the altar.

The closing shot is of a fancy black car driving away, trailing ribbons, tin cans, and toilet paper. ‘Who the (bleep) did I marry’ is chalked on the back window.

Marriage Officiant (sounding disgusted): Who the bleed did you marry?

Voiceover: Who the bleep did I marry? All new [episodes?], only on Investigation Discovery.

This is not just a ridiculous comparison, it’s a pretty damned offensive one that equates being trans* with being a serial killer – and once again equates being trans* with lying, which is the same argument that murderers make with they murder trans* people.

FuckYeahFTM looked up the contact information for the Discovery Network, encouraging people to get in touch and point out how bloody offensive and shitty this is:

Here’s more info about the show:

Who The Bleep? [Opens with sound & Video]

The other episodes they have include: Married to An Embezzler, The Biggest Con, Married to a Spy, Married to A Bank Robber

And they are including marrying a transman, or in their words “He is actually a She” on that level, with criminals and murderers.

Discovery doesn’t actually make it easy to contact them with concerns (I had to use a search engine to find the Contact page because it wasn’t anywhere on the Who The Bleep? page), so here’s how I did it:

32. How can I contact you with programming comments or questions?
We welcome your e-mail comments and questions, which you can send to us by clicking here.

This is the most efficient way to contact us. Comments or questions directed to anyone else at Discovery Communications will be forwarded to Viewer Relations, which means it will take us longer to follow up.

You can also write to us at:

Discovery Communications
Viewer Relations
One Discovery Place
5th Floor
Silver Spring, MD 20910

There is actually a lot of “required information” before Discovery will let you contact them. They want your age, your name, what network you’re writing about (Investigation Discovery in this case), post code, Cable provider, program time, and “information needed” (along with several other pieces of non-required information) before you can fill in your comment. I believe it’s five steps before you can tell them what your concern is, the site is very slow (at least for me), and I have no idea how accessible it is. (It does not like my computer at all)

However, reaching out and making it clear to Discovery that this stuff is not okay, that being trans* is not a crime, is not lying, and is not the equivalent of being a “Russian Spy” or a “Bank Robber”, is important, and I hope as many of you as possible will contact them and make that clear.

This is what I wrote, if you are looking for a template:

Hello Discovery Network,

I am disgusted and appalled at your decision to equate being a trans man with being a criminal, a spy, or a murderer. A trans man is not “really a she”. He is a man who married a woman. The decision of your network to “out” someone like this is especially dangerous, as many trans people are murdered for allegedly “faking” or “lying” or otherwise “cheating” their sexual partners.

I hope you will reconsider your decision to air such an exploitive, dangerous, and abusive program.

Again, here is Discovery’s Contact Form. I emailed them last week and have so far received only a form letter, but if we overwhelm them with numbers, surely they have to pay attention, right?

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.

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.

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.

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?

Girls in Pants: The Very Special Lesson on How to “Draw the Chair”

Cover for "Girls in Pants: The Third Summer of the Sisterhood" By Ann Brashares, a light orange cover with the title in bright blue, authors name at bottom, and a pair of well worn blue jeans centered over the names of several universities "Brown, RISD, University of Maryland, Williams) in the background in darker orange.Gentle Readers! It has been a long time and I know you were afraid that I had forgotten to read and review Ann Brashares’ third installment of the much beloved YA series The Sisterhood of the Traveling Pants! Well, fear not! I managed to fit it in whilst chewing my way through Terry Goodkind’s Sword of Truth series (don’t you worry, I have something for all of you on that, as well!), which is not a small feat. Sometimes it is nice to read a book that isn’t beating me about the head with an Ayn Rand-ian philosophy cudgel.

*ahem*

*stops derailing her own post*

For those of you who haven’t read The Sisterhood of the the Traveling Pants series, I can give you my brief brush up, and if you have, feel free to skip ahead to the rest of this post.

The Sisterhood of the Traveling Pants is a wonderful series about four young women: Bridget (Bee), Carmen, Lena, and Tibby, born withing seventeen days of each other. They are more than just friends, having grown up together due to their mothers being best friends, and having grown so close that they forget where one ends and the other begins. It is not uncommon to find Tibby tapping her foot on Lena’s leg or Bridget leaning her chin on Carmen’s shoulder while playing with her hair. They can tell when each other are hurting or hiding something or bubbling over with joy or exciting news. They have grown up sharing in each others’ joys, triumphs, losses, and sorrows. They have experienced growing pains and growing up as a unit and have leaned on each other for support through things like Carmen’s parent’s divorce, Tibby’s parent’s decision to have more children when she was much older, and Bridget’s mother’s suicide. Even as the other three mothers drifted apart, they seemed to hold tighter to each other Continue reading Girls in Pants: The Very Special Lesson on How to “Draw the Chair”