Tag Archives: relationships

Recommended Reading for August 17, 2010

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Sarah Fenske at the Phoenix New Times: ‘Til Death Do Us Part: They Got Married. Then Everything Changed

This is a love story, albeit one with a medical twist.

Unbeknownst to anyone — including Kevin himself — there was a tumor the size of a Granny Smith apple pressing onto Kevin’s brain.

Kevin didn’t need therapy. He needed surgery.

Patient C: Pain: Attitudes

Often, before I even mention pain to others, I have to overcome classic attitudes I have internalized, the largest being “is this important enough to bother someone els[e] with it?” followed by “am I being a wimp?” I have found that the fear of wimp-dom keeps many people from talking about their pain at all, or at the very least only to those people that are trusted. If I do not trust you, I will never bring it up at all, or I will bypass a pain related issue by making a weak overall health generalization, if forced (which I hate, thank you very much).

Wheelchair Dancer at Feministe: Just Who You Callin’ White

My interlocutor poked me: “Your mama white?” All thoughts of positive interaction slipped beyond my grasp. I knew that we weren’t actually talking about race and yet. Yet, I answered her question literally. My English accent returning more strongly than usual, I talked about my white father and my Afro-Caribbean mother; I spoke bitterly about the loss of Spanish and Creole-speaking family members and English as the language of acceptance. I gave her the history full and square. “Now,” I demanded, “do you think of me as white?”

In FWD-Contributors-Elsewhere news, our own s.e. smith is currently guestblogging at Bitch Magazine’s Social Commentary blog! The series is called Push(back) at the Intersections, and you can read the intro post here. An excerpt:

Feminism has a problematic history. A profound lack of awareness about this history means that we engage in the same dynamics over and over again. For example, the failure of many nondisabled feminists to recognize the history of eugenics in the reproductive rights movement means that it’s hard to understand why disabled feminists feel marginalized by the mainstream feminist and reproductive rights movements. Likewise, a lack of awareness about the history of transphobia in the feminist movement leads many cisgendered feminists to stumble unawares into very loaded conversations.

You can keep up with s.e.’s series of guest posts over at Bitch Magazine!

And finally, my good friend Paolo Sambrano, an amazing artist, performer and writer whom I have known for many years, is looking for funding for his incredible solo show Bi-Poseur, in which he humorously chronicles his experiences with life, death, mental illness, and, in his words, “the quest to write the perfect suicide note.” The show premiered to rave reviews earlier this year, and Paolo is currently attempting to fund a month-long engagement of the show in the San Francisco Bay Area, beginning in September; donations will go toward things like renting theater space, printing programs, marketing the show, hiring a tech person, and more. Here’s some info about the show:

Bi-Poseur [is] a pop-culture encrusted, kinetic look at the intricacies of trying to hang oneself with a Playstation controller, possibly being bi-polar, full scholarships to exclusive Bay Area prep schools, psych wards with twelve year old white supremacists, finally grieving the loss of a parent, motivational speaking, to live tweeting your own funeral. And push-ups. Among other things.

If you’d like to learn more, purchase tickets to the show or make a donation, you can visit Paolo’s Kickstarter page, or his website. I urge you to donate if you can (some neat donation perks are offered at various price points), and go see the show if possible!

A Saturday sketch

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(Cross-posted at three rivers fog.)

I noticed something was wrong in the earliest hours of the morning, when my husband had disappeared from bed but I did not hear anything going on in the bathroom and could not see him anywhere.

Around 8, he got up to go to the bathroom and I lifted myself out of bed to use it after him. When he emerged, he was very clearly not well and said, in a seriously distressed tone, “I just had the most awful night” and stumbled around me back to bed.

It’s not emotional, he clarified as he curled up awkwardly on his side of the mattress, it’s just physical. He had problems feeling seriously sick to his stomach, which never culminated in anything, just churned on and on without relief, and had serious sharp pains in several places — shoulder, lower back, knees — and a generalized all-over ache that left him feeling miserable, unable to find a single comfortable (nay, just non-miserable) position no matter where he stood, sat or lay.

“This is how I imagine you feel every day,” he moaned, as he tossed his body into a different awkward position in an attempt to find some relief.

He needed the still, quiet, restful sleep so badly, but hurt too much to stay lying in place in bed for more than a few moments, and the pain was too distracting to be able to actually fall asleep — and precisely because of this, he was in no condition to be anywhere else but in bed sleeping. A familiar situation for me.

A few minutes later, already in his thirtieth position attempting to achieve some state of rest in bed, he pushed over to where I sat on my side of the bed and asked, “How do you do this every single day?”

Staring at my nightstand drawer, I smiled a bit and replied, “A lot of medicine. And you to help me.”

Call for Submissions is out for Disability Blog Carnival #63: Relationships

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The call for submissions is out for the 63rd disability blog carnival, which will be held at the Dreamwidth disability community. PWD and allies are welcome to submit.

The theme is “relationships”. Avendya explains:

This does not necessarily mean romantic relationships – how has your disability affected your relationship with your family? How do you manage balancing friendships with a limited number of spoons? How well do your coworkers deal with your disability? Basically, how does your disability impact (or not impact) your relationships with the people around you?

Submissions are due by February 20th – just leave a comment in this post to submit your article. Older essays are welcomed so long as they haven’t previous been in a Disability Blog Carnival.

Spread the word!

Recommended Reading for November 23

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There was no recommended reading on Friday because I forgot I hadn’t done one for the day after the Carnival. Oops!

Changing the Perception of Braille

I recently watched a Ted talk that focuses on the idea that how we feel about something is totally based on our perception. It seems to me that in ore for us to improve braille literacy, we are going to have to change people’s perceptions. Organizations like the NFB and ACB are already doing things to help change people’s attitudes towards braille, but I think we can go even further.

Many people are choosing to learn sign language because they think it’s cool. So the question is how do we make braille cool? I think we have to start with children and teens. When we’re younger, we tend to me more likely to accept change and set trends. With this in mind, I have a few ideas of how we can make braille cool in the eyes of our children, and if we can do that, then maybe that will translate to the adults in their life.

Blind Need More Access To the Written Word

I love to read, and I’ve been doing it ever since I was able. My wife is also an avid reader. But we are blind, and so are many of our friends. The organization I lead, the National Federation of the Blind of New York, is made up of blind people. Although many of us read everything we can get our hands on, we can’t get our hands on very much to read.

There are services for us, of course. Government entities and nonprofit organizations convert books into Braille, audio or digital form for our use. But only about 5 percent of all books published undergo such a conversion. The largest collection of books in Braille and audio form in the United States has, perhaps, 70,000 circulating titles in its collection. A few more selections are available as commercial audio books, but these are up to three times as expensive as print books.

Service Dog Etiquette Part 1:

I’m sure you’re thinking, how does my petting a service dog undermine his relationship with his person?

Well, it works in two ways. First off, my service dog works for me because he believes I am the most awesome person in the world and that all good things come from me. All petting, all praise, all toys, all games, his soft fluffy bed, all food, all treats – that all comes from me. Secondly, if someone other than me pets him, he starts thinking…oh, people will pet me. If people will pet me, it’s worth paying attention to people rather than my partner. If he pays attention to people rather than to me, I could have a nasty fall (among other things) – one that could injure both of us. Keep in mind when you read this that the average person who works with a service dog is more likely to be hurt, and hurt badly, by a fall. We tend to have service dogs because there is some kind of physical fragility or injury to us already, after all. When you’re dealing with guide dogs, I think the risk is even greater – a distracted guide dog might walk his person into traffic!

When People Say Stupid Shit

I. Cannot. Afford. A. Place. Alone.

My maths are simple. I have an income, which I get from the state until they figure out what sort of job I can handle with my disability. That income is all I have. Anything I might earn by teaching two hours a week (which I do) is subtracted from that income. That means that I cannot raise my income in any way. Unless, of course, I do so illegally, which would be pretty stupid considering the risk of discovery. My income is what it is and cannot be adjusted upwards. At all. Not until I get some help for my disability.

In the news:
Study Unravels Mystery of Dyslexia

New research may provide an answer as to why children with dyslexia often have difficulty hearing someone talk in a noisy room.

Dyslexia is a common, language-based learning disability that makes it difficult to read, spell, and write. It is unrelated to a person’s intelligence. Studies have also shown that patients with dyslexia can have a hard time hearing when there is a lot of background noise, but the reasons for this haven’t been exactly clear.

Now, scientists at Northwestern University say that in dyslexia, the part of the brain that helps perceive speech in a noisy environment is unable to fine-tune or sharpen the incoming signals.