sexgenderbody

About my sister, Robin

goteamrobin:

It’s late, and I’ve been up catching up with stuff related to the campaign, and I wanted to vent and get some things out.

You know how some people take sacks of unwanted kittens and just throw them by the side of the road? That’s how I feel about what has been done to my sister. At 20 years old, she should be close to graduating college, traveling the world, pursuing a career. Instead she rots aimlessly in a nursing home because nobody cares enough to help her on the path to recovery. Of course, we as her family care more than anybody could, but a backwards and lackadaisical (at best) system keeps our influence to a minimum. A simple familial situation was grossly mishandled while she was temporarily with her dad in Oklahoma, Robin taken by child protective services under distorted and ill-conceived circumstances, and when they couldn’t find a family that could accomodate her special needs, they dumped her on the side of the road, so to speak, where nobody even attempts to help her.

In the nursing home, they refuse to do anything useful. The whole reason I’m doing this fundraiser is because the state is too disinterested to even equip her with a proper wheelchair. For those who have seen the videos, you’ve seen how useless it is. The foot supports are broken, and it’s manual. My sister doesn’t have full use of her hands! Why would you provide her a means of transport that requires full use of them?! A while back, we found out that she was no longer attending college due to the insurmountable difficulty she had getting to class. The state thought they could just throw her scholarship money and she’d be fine. Not the case. Everybody realized what was going on with her classes, and they stood by and did nothing while her future slipped away from her. 

The nursing home tried to put Robin in a vocational rehab program, meant to give her basic job skills. She is 20 years old, mind you. This is a case of too little, too late. Only THEN did they seem to realize she didn’t have the basic physical faculties to support herself, and therefore needed to learn how to do that before she could hold down a regular job. The vocational school was like throwing a bucket of water on a housefire and saying “see? i did something!” Only recently has anybody bothered to even make a token gesture. We’ve heard from her most recent case worker (they change them about as often as they changed Robin in foster placements) investigating and offering what help she could, and through her we realized she didn’t even have a physical therapist. Oh, yes, there was an assistant who helped her with a few exercises sometimes, but this person was not a licensed physical therapist. As her legal guardian they should be providing her with the means to improve her situation. We originally had trouble just finding what kind of chair was needed for Robin because we couldn’t find anybody qualified to give a medical opinion on it. The one doctor we DID find just recommended a “power wheelchair”. That’s like telling a person with a cold they need medicine.  I tried to get in touch with a lawyer who might be able to help us improve her quality of life, but not only could I not get in touch with the man, the several promises made to “call me back” were not upheld. Any newspapers I tried to contact wholly ignored me. Why the hell does nobody give a damn about my sister?!  I’m tired of nobody listening when we ask for help. Just because she is not the only person in the world with cerebral palsy doesn’t mean she’s any less important!

Just recently my mother called Robin to see how she was doing because she hadn’t heard from her in a couple weeks. The receptionist said that Robin was still in bed-at 1:30 in the afternoon. When asked why she hadn’t been assisted from bed, the lady replied “well, it is a nursing home.” My sister is not some aging retiree who has already paid their dues to society and needs to rest for the benefit of their health. She is a growing young lady and needs both mental and physical stimulation if she is to get anywhere. It’s amazing how her constitution has held up given the complete lack of interest and motivation from her peers and the adults around her. Everyone has just given her up to the ravages of life without even a whimper. I cannot handle watching her potential just slowly die out like a flickering candle like it is right now. I’d love to see her accomplish everything that she’s talked about doing. Right now the piece of garbage she’s been given is obviously holding her back, but if we can give her the standing wheelchair she really needs, then she could finally get up the confidence to maybe do some of the singing she says she loves so much. Not to mention she’s a huge animal lover, so she’d be more able to be an animal trainer and volunteer at her local shelter. She could even learn how to ride a horse. She absolutely could go back to school and be well on her way towards a degree in Criminal Justice. Right now she’s just so restricted, and I want to see her live the life that I see others living so happily. I can see her going out with a group of friends to the latest Justin Bieber concert, or the movies to see the latest Ashton Kutcher movie. Not to mention the traveling! In my family, traveling is the purest form of living. She could finally see all the places she’s talked about…the Big Apple, the dream lands of Europe, and of course-her family here in South Florida. Better yet, she could get her Criminal Justice degree abroad. By getting this wheelchair for her we could broaden her horizons so much farther than the dusty lands of Oklahoma.

I’m angry, and I’m angry for her. But she still gives me hope. Every time I talk to her, she’s still smiling. I don’t know how she does it, but despite everything, she’s always bubbly, and giggling, and cheerful, and smiling. And that … that hope, is what inspires me to keep trying for her. And hoping. And not giving up like so many others have. I still believe in you, Robin.

Lisa

http://www.goteamrobin.com

disappearing—boy:

@Draggle:

Well, the disability rights violation of the moment is organ donation (‘brain death’ is a legal and medical fiction with a constantly-changing definition that exists only to excuse taking organs from living people (killing them in the process) with the justification that they’ve been disabled by a brain injury that’s closer to a minimally conscious state than anything, the drugs that the recipient has to take basically give them what amounts to AIDS + serious mental illness and this is purposefully kept secret, apparently taking kidneys from ‘terminally disabled’ babies at birth is a thing that happens now), but in the past, I supported all sorts of major violations that horrify me these days (Stealthy, Stealthy, why did you ever think eugenic abortion would help anyone?).

“I’ll pray for you”

gimpunk:

Don’t fucking bother

Fuck you, EA - I wanted to play Dead Space too!

gothcrossing:

(First off, let me make it clear that I am NOT blaming the entirety of EA of, for that matter, Visceral Games for the issues I discuss in this rant. I needed a convenient title, but the truth is, I’m not sure who exactly it is to blame. But there is SOMEONE out there who seriously deserves a punch to the face.)

So, today I made a little text post about my amusement at purchasing a gory, violent, and all around not-feminine game while wearing lolita. Said game was Dead Space 2. I was ridiculously excited about this game. I’ve wanted to play it since before I even got a PS3 (which was only two months ago). I became a devoted fan of the soundtrack and art for the game, waiting for the day I would actually play it. When that day finally came, I popped in the disc, full of glee.

That glee quickly turned to seething, burning rage when I realized that I physically cannot play this game due to the way it is designed.

How, you ask? Well, let me ask you: Have you SEEN the text in this game? I sure haven’t, because it is twenty times to small for me to be able to read.

I don’t have terrible vision, but it’s not good either due to a history of quickly-deteriorating eyes within my family. It’s not like I can’t read anything in any game - most games have perfectly well-sized text which I can read and be merry with. 

But this game decided, “Fuck accessibility! We’re going to have infinitesimally small text that only people with perfect vision and an HD TV can read!”

I…seriously, I cannot describe how much this pisses me off. Allow me to narrate my first (very short) playthrough of Dead Space 2, to show you why some bastard’s design decision prevents me from playing the game:

I can already tell I’m going to have some trouble, even at the main menu. But I squint my way into starting a new game. Cutscenes, cutscene - oh look, I can play! Okay, so…wait, what? What is that mini-tutorial saying? It’s too small for me to-

Necromorph: OHAI! *Nom* GAME OVER.

I decide to ignore the tutorial and figure out the controls on my own. I finally figure out how to run and get past the first few rooms.

Suddenly, another tutorial! What is it saying? I can’t see, so fuck it. Let’s keep moving.

Look, an - what’s that say? - an audio log! Oh boy, let’s listen! Wait, how do I listen? Maybe this nice tutorial will - OH FUCK YOU.

Ooh, a text log. Surely if the text is important, the game will make it big enough to be legible, right?

WRONG. This is about the point where I start to rage. Can ANYONE even read something that small?!?

But I press on, bitter over whatever plot point I just missed.

So, telekinesis! Sounds like fun! But of course I can’t read how to use it, so I have to figure out on my own through trial and error. This gives the attacking necromorph ample time to eat my face off and give me another game over.

I trudge on, figuring everything out through annoying sessions of trial and error, usually resulting in a game over that could have been avoided if the game actually told me - LEGIBLY - how to play. (And before you say anything - the manual didn’t help at all, beyond telling me how to aim.)

Eventually I get my first weapon - the plasma cutter! Yay! Surely this will make things better!

Nope.

It’s when I get to the “security lockdown” event that the realization hits me like a ton of bricks: I can’t play this game. What triggered that knowledge was trying to fight while the lights were flashing on and off like the world’s worst rave. I don’t have epilepsy (thank gods, how dangerous would that event have been to someone with it?!), but one of my eye’s problems is oversensitivity to changes in light. Basically, my pupils are eternally dilated naturally, so I can’t handle large amounts of light unless I very slowly expose them to a gradual shift ahead of time. When something like what happened in this game happens, my eyes flip out and send what feels like “HOLY SHIT WE’RE DYING” signals to the brain, effectively being painful and rendering me half-blind for a minute.

After I got one last game over due to the fact that the I can’t play while my eyes are having a seizure, I put the controller down.

There you have it, game designers. I can’t play your game. And I can imagine lots of other people can’t as well. I want to give you money, but I’m sure as hell returning this game, because you designed it so that I can’t play it.

What makes it so ridiculously is that this would have been so easy to fix. Just take a look at your game, realize that you’d have to have perfect vision and no health problems to actually play it, and say, “Hey, here’s an idea, why don’t we make the text bigger! And tone down the seizure-inducing lights, just a bit.”

So, there you have it. It makes me almost depressed that I can’t play a game I’ve been waiting for YEARS to play, just because some ignorant dipshit on the design team decided to be a total jerk.

(For reference: The version of Dead Space 2 I purchased is the PS3 Limited Edition. I just assume that the bad design is the same in all versions.)

Since people have told me stupid questions they have been asked, I figured I would share a few I have been asked.

lifefuckyea:

As someone who is disabled/amputee I have been asked many dumb questions, here are a few. Keep in mind they were asked by grown adults.

1. Were you born with a prosthetic leg?

2. Is your foot real, or is that prosthetic too?

3. Woah cool costume! How did you make your leg disappear like that? (this was asked/said in the middle of summer, while I was at work wearing regular clothing).

I have been asked many other stupid questions. I’ll share more later. Ah the life of having a disability, being asked stupid questions every day. Lol

Dear #cripple tag/TABs,

uctdgirl:

My name is Heather. I am an actual cripple. I walk with one or two crutches every day of my life due to severe leg pain and balance problems. I call myself a cripple because that’s what I am. If you are limping a little bit from spraining your ankle you are most definitely not a cripple. 

You see, the cripple identified reclaiming this word. Many other groups have done the same with offensive words, and I’m sure you don’t need examples of that. And like those other groups, all disabled people are different and don’t all identify with cripple. Don’t call me a cripple unless you have my permission- you will get smacked with a crutch. That is probably a good rule of thumb with other disabled people as well. 

Also telling me that I’m not allowed to identify with cripple because I’m not in a wheelchair/can walk some without crutches will get you smacked with aforementioned crutches.

So next time you think about using the word “cripple” to describe your broken leg or sprained wrist, just pick another word.

Sincerely,

An Actual Real Live Cripple

Do you live in FL? Are you in high school? Do you have a physical/learning disability?

valbakuh:

If you answered yes to all three of those questions fill out an application to this year’s Youth Leadership Forum!

http://www.abletrust.org/ylf/students/_doc/2012-YLF-Delegate-Application.pdf

It’s an amazing experience. It’s a 5 day/4 night camp held at Florida State University every July :D

You meet so many people with similar struggles as you and also the same desire to lead and change the world as you. 

The camp is completely paid for by the Able Trust Foundation. Food, housing and even travel!

Any questions? Feel free to ask http://valbakuh.tumblr.com/ask  or valbakuh@gmail.com

I have been attending this camp since 2009 it’s COMPLETELY changed my life. I’ve met so many new people and I have made some life-long friends.

Sexual Aspects of Disability- Stanley H. Ducharme

fuckthedisabled:

Social/historical attitudes towards disability and sexuality:

“For people with disabilities, the acceptance of sexuality as a justifiable and sanctioned area of rehabilitation has been much more controversial (3). Historically, people with disabilities received little information on sexuality and were often regarded as nonsexual and incapable of an intimate relationship. This misperception not only has persisted in the general population but has been equally prevalent in the medical community as well. In spite of the similarities in sexual functioning for people with and those without disabilities, the tendency has been to emphasize the differences between the two groups and to view people with disablility as being sexually impaired (4). Obviously, this tendency goes much deeper than issues of sexuality and is a reflection of society’s general discomfort of people with disabilities. In reality, the sexual rights and responsibilities of people with disabilities are identical to those of all other people. Everyone, regardless of disability, has the right to sexual information and expression and the right to develop the fullest potential in all aspects of life.”

Sexuality:

“Sexuality is the integration of the physical, emotional, intellectual, and social aspects of an individual’s personality that express maleness or femaleness. Sexuality is an expression of the total personality evident in everything done by a person (7). Interactions with others, personal hygiene, speech, dress, and expressions of affection are all an important part of sexuality. Given this broad definition, sexuality may be regarded as an avenue toward intimacy and may be directly or indirectly affected by the presence of a disability.”

Development of Sexuality/Sexual Identity:

“The first three stages of development represent infancy and childhood. They reflect the achievement of trust, autonomy through mobility, and the ability to explore the environment. Even at these early stages in life, sexual behaviors and curiosity are quite typical and expected. This is true for children with and without disabilities. As individuals move through life, they encounter a number of tasks set by their cultural milieu and by themselves as biologic entities. When disability occurs, not only are the current developmental tasks threatened, but the persons, at least temporarily, regress to an earlier stage of development. This regression has broad implications for an individual’s psychological and sexual adjustment… Thus, for a person with a disability, a healthy sexual adjustment and the ability to achieve intimacy depend on successful resolution of the developmental tasks at the time of injury or onset of illness. The developmental process can be further complicated for young people with gay and lesbian orientations. More than simply a matter of having a same-sex partner, gay and lesbian identity is similar in scope to ethnic or racial identity, involving identification with the values of a discrete subculture (32). The process of forming a gay or lesbian identity evolves in stages from confusion and conflict around the emerging awareness of the same-sex urges to acceptance. For the person with a disability, the presence of homosexual issues can further complicate an already difficult sexual adjustment.”

Sexual Adjustment:

“Successful adjustment depends on the recognition that choice is still available and is influenced by many factors such as age at onset, quality of social supports, physical health, gender, and type of illness or injury. Successful sexual adjustment also requires the same gradual, and sometimes painful, emotional process. Losses need to be grieved so that the remaining strengths can be developed and nurtured. Because of different personality styles, however, not everyone completes this difficult adjustment. After onset of a traumatic disability, individuals frequently go through a period of reduced sexual drive or performance. Others go through a period of sexual acting out, presumably to validate their survival and sexual identity. However, substantial numbers of people fail to resume an active sex life after injury because of misinformation, problems of adjustment, or shame regarding body image and function… To the extent that a person with a disability can learn to value his or her new sexual abilities, as opposed to trying to regain the same sexual expressions that existed before the injury, and to establish a positive level of communication, the person will achieve a satisfying sexual adjustment. These adjustments, however, often come slowly after a period of intense grieving and sadness. People with disabilities who achieve success in their sexual functioning often do so because of increased communication and a willingness to experiment with developing romance and intimacy as well as technique.”

Sexual Desire:

“Inhibited sexual desire is a highly prevalent dysfunction, affecting possibly up to 50% of sex cases seen in clinical settings (42–44). Although no data currently exist, this figure is probably higher for people with disabilities. Now known as hypoactive sexual desire disorder, it is characterized by persistently low or absent sexual fantasies and desire for sexual activity not caused by substance abuse or a primary psychiatric disorder. The sudden onset of disability or the more chronic issues of malaise, pain, fatigue, or stress can contribute to decreased libido (45). Low desire after onset of a traumatic disability is, for the most part, of limited duration…The level of depression after disability occurs may in fact be the single greatest factor in determining the level of desire for sexual activities. Depressions associated with disability are complex medical problems that require an in depth evaluation and treatment plan. Often a psychiatric or psychological consultation may be warranted. In other instances, the precipitating factors responsible for the loss of sexual desire may be less apparent. Additional effort will be required to unravel the chain of events responsible for diminishing the libido. In addition to traumatic disability, many chronic illnesses and medications can result in inhibited sexual desire, either temporarily or permanently”

These are all excerpts from “Sexual Aspects of Disability” - Stanley H. Ducharme, I tried to summarize (in bold) the more significant information for those of you intimated by large blocks of text, but I would strongly recommend reading the entire passage. You can do so here: http://www.stanleyducharme.com/pdf/sexual_aspects_pd.pdf