Sunday, February 23, 2014
Monday, February 24, 2014
Tuesday, February 25, 2014
Wednesday, February 26, 2014
Thursday, February 27, 2014
Friday, February 28, 2014
Saturday, March 1, 2014
Sunday, March 2, 2014
Saturday, March 1, 2014
Rare Disease Day (Better Late Than Never)
Friday was Rare Disease Day. I thought for a moment or two about posting something on my “disease”, then forgot. So, here, belatedly, is my personal perspective as a person who has a “rare disease”.
One reason I forgot about Rare Disease Day is that I have never thought of my “condition” as a “disease.” Even before I consciously knew anything about the “Social Model” of disability, I tended to view my disability as something more like race or ethnicity than like cancer or malaria. I type that, and ask myself, “Really? Have you always felt that way, even as a child?” And I think about it, and I say yes. To me, even as a child, my disabilities felt like something that set me apart more socially than physically. Mind you, I rarely felt severely set apart. I have been very fortunate to have lived in a series of fairly welcoming communities. But, the social divide has, at least until recently, felt more significant than my physical differences.
That said, even my physical differences never felt to me like “disease”. They never felt like something from the outside that had attacked me, or something I could conceivably get rid of. That’s probably what I and lots of other disabled people mean when we say that our disabilities are “part of us.” It’s probably the most persuasive argument for why the language pendulum is swinging away from saying “people with disabilities”, back towards saying “disabled people”, at least for some of us.
At any rate, I have never, to this day, been able sustain any real interest in Arthrogyposis as a “disease”, a “condition” or whatever it should be called. I am very interested in how my spine curvature affects my lung capacity. I have strong and mixed feelings about how my body looks because of Arthrogryposis. I wish every day, frankly, that I could breathe more efficiently so I wasn’t so easily tired. It would be nice to have a bit more upper body strength. I don’t actually wish I were taller than 4’ 1” … my height is probably the part of my disabilities that bothers me the least … but I have to admit that I occasionally speculate on what it would be like to be, say, 5’ 5”. I am grateful that I am able to know enough about my disabilities to integrate them into a workable understanding, and that for a variety of reasons, I have never felt like my disabilities made me a lesser person.
The fact that all of these traits in me derive from a genetic condition called Arthrogryposis doesn’t interest me in the least. I know that a lot of people attach great importance to their “diagnosis”, and maybe I would, too if I didn’t have one. But as it is, my particular diagnosis means almost nothing to me. It’s the practical consequences that matter to me, and it’s always been that way for me as long as I can remember.
Of course, I can see how Arthrogryposis could be intrinsically interesting. The fact that it doesn’t interest me doesn’t mean it isn’t interesting. So, here’s a Wikipedia link to Arthrogryposis, which I, myself will read and see if I learn anything new.
Join The Vigil
I am about to sign on to the virtual part of the vigils to remember disabled victims of filicide–disabled people murdered by their family members or caregivers.
You can log in anytime between 3:00 and 9:00 PM Eastern Time today (March 1, 2014), by clicking the photo below.
Addendum:
According to the Autistic Self Advocacy Network, live, in-person vigils are being held today in the following cities:
Sacramento, CA
San Francisco Bay Area, CA
Fort Myers, FL
Atlanta, GA
Chicago, IL
Boston, MA
Baltimore, MD
Towson, MD
Houghton, MI
Missoula, MT
Robbinsville, NC
Lincoln, NE
Woodbridge, NJ
Reno, NV
New City, NY
New York City, NY
Rochester, NY
Syracuse, NY
Eugene, OR
Portland, OR
Pittsburgh, PA
Seattle, WA
Washington, DC
Halifax, Nova Scotia
Another Addendum:
S. E. Smith, xojane.com - June 19, 2013
Here is an excellent, hard to read, but important article that provides very specific context to this vigil. Please read it, especially if you are not sure what this Vigil / Day Of Mourning is all about. Thanks to Tumblr bloggers Wheeliewifee and Sunshine, Been Keeping Me Up For Days who posted and reflagged this.
Why Disabled People Hate Bureaucracy
Okay, I guess everyone hates bureaucracy, but disabled people hate it more, because we have to deal with it more often, and the stakes are usually higher, and consequences worse, when bureaucracy fails.
Case in point:
Case in point:
"I’ve not had a shower for nearly 18 months, and it’s been about 2 years since my last bath. I have a wet room but no suitable shower chair, which they won’t give me until I have a hoist, which they won’t give me until I’ve had the case conference, which I can’t have until I’ve seen the consultant, who I can’t see until I can get transport sorted (but is meant to be happening in February). Yeah, complicated.”
From a blog post by Dannilion found at livingwithdisability, via too brain fogged for this.
Friday, February 28, 2014
Day Of Mourning
Saturday, March 1st, the disability community will gather across the nation to remember disabled victims of filicide–disabled people murdered by their family members or caregivers.
Autistic Self Advocacy Network - February 24, 2014
Some facts from the Autistic Self Advocacy Network:
"In the past five years, over forty people with disabilities have been murdered by their parents."
"In the year since our last vigil, our community has lost at least ten more victims."
"In January of 2014, two more disabled people were lost in murder-suicides at the hands of their parents: Damien Veraghen, age nine, and Vincent Phan, age twenty four."
The deaths are bad enough. The reason disability activists are angry about them and having vigils is how the deaths are often portrayed in the media and treated by the judicial system.
Too often, news stories portray the killings with more sadness than outrage. It's sad, you see, that the murdered person had such awful, trying disabilities that their caregiver just couldn't take it anymore. The there's my personal favorite situation ... where the killer is a very old man or woman and the disabled "child" they kill is a 50 year old adult who has been "cared for" by just their parents their entire lives. It's sad because the poor old man or woman just didn't know how their baby would be taken care of when they die. Far better to kill them now than to have them cared for by *gasp* strangers!
Then, juries and judges seem to go out of their way to lessen the consequences for the killers. The law can't condone murder, no sir! But, wink, wink, shake of the head, we understand. NO ONE can know how hard it is for caregivers, so who are we to judge? He was a saint to dedicate his life to this person to begin with. It's sad that in the end he cracked, but what's to be gained by punishing the poor old guy?
The thing is, a lot of these sentiments make sense, once you view the person murdered as something less than fully human ... a dead weight “vegetable", a bundle of unsolvable logistical problems, or a screaming, irrational hurricane that simply won't act normally, ever! Except that they are all fully human, with self awareness and points of view. Where is the outrage for their loss of life, the end of their existence and potential?
Still and all, I don't care, frankly, about seeing these killers literally punished for what they have done. I care about the message it sends when they are let off the hook in the public consciousness.
Organizations involved in the nationwide vigils include:
The Autistic Self Advocacy Network, ADAPT, Not Dead Yet, the National Council on Independent Living, and the Disability Rights Education & Defense Fund.
Check the article linked above for a list of places holding vigils on Saturday, March 1. You can also participate in a “virtual” vigil via a Facebook Page.
Thursday, February 27, 2014
Sex And Disabilities: Followup
Well, here it is. Laci Green and her friend Olivia discuss Sex and Disabilities.
My first reaction? Big thumbs up. I am so impressed with how much diverse ground they cover. I especially appreciated Olivia admitting that she’s less able to talk about sex and people with intellectual disabilities, since that kind of disability isn’t her personal experience. That said, I think she was probably right to say that the main issue is consent, and then Laci suggested that it would depend on the individual … which is probably always a safe answer when it comes to sex in any situation. I will be curious to see what others with disabilities think of this video. It was way more specific than most of what I have seen and heard on the subject. Most commentary doesn’t go beyond just saying, kind of annoyed, “Of course we can have sex!”
More like this please!
Seriously? ... Again?
Heather Alexander, Houston Chronicle - February 26, 2014
The headline says it all. It is going to take a long time for some people to get used to the fact that guide dogs aren’t the only kinds of disability service animals, and that they all should be allowed in public places, even those that otherwise have “no pets” policies.
Apparently this is partially a Texas thing, because Texas actually passed a law specifically making it a misdemeanor to bar service animals, including those for veterans with Post Traumatic Stress Disorder. Gov. Rick Perry, surely a friend to business and as old-fashioned conservative as they come, apparently supports and is proud of this law, but a series of incidents seem to show there are skeptics out there.
The worst problem in society today is PEOPLE PRETENDING TO BE DISABLED SO THEY CAN TAKE THEIR DOGS INTO COFFEE SHOPS THAI RESTAURANTS.
Sex And Disability
From the Sex + Tumblr blog, via Sunshine, Been Keeping Me Up For Days.
The photo caught my eye, but this isn't really a photo post. The young woman on the left is Laci Green, who has a really well put together YouTube Channel called Sex + a frank video series about sexuality with Laci Green, where she gives information and advice on sex and sexuality. She apparently is working with her friend on the right on a video segment of her show on sex and disability. I like that they’re asking for people with disabilities to send them questions.
I also liked one of the topic tags on the post where I found this … that says: HOPING THIS WILL BE GOOD AND NOT TERRIBLE.
I think I know what she means. It could be really amazing, or it could be cringe-worthy. I went to Laci Green’s YouTube Channel and watched some of the videos. They are very frank, very “sex-positive”, and as far as I can tell, very responsible and accurate. The key to making this all appealing is probably her fun, feisty tone.
So, I’m optimistic. The only possible drawbacks I can imagine finding in her sex and disability video are:
1. If it is so pitched to young people that oldsters like me might find it alienating, and
2. If it is so pitched to women alone that guys like me might feel left out of the discussion.
I would have no objection to either of these if that is the usual nature of this channel. And I’m sure I’ll learn something interesting no matter what. But it would be really great if the video includes a hetrosexual male perspective … really all gender and sexuality perspectives … and maybe has a word or two for older folks with disabilities on returning to a sex life, or perhaps beginning a long delayed sex life.
Yes, one could make a whole blog about sex and disability, and not run out of topics for years.
Wednesday, February 26, 2014
Thank You Gail Collins
Gail Collins, The New York Times - February 19, 2014
It's rare for well-known, "mainstream" Op-Ed columnists to write about disability issues. It's even rarer that they get it completely right. That's partly why I was so pleased to find a link to this Gail Collins column about the UN Convention on the Rights of Persons with Disabilities (CRPD), on Andrea Shettle's Tumblr blog.
I especially like that Collins gets specific about what has so far kept the United States Senate from ratifying this convention. It isn’t about the generic “Do Nothing Congress” theme, although it is a variation of it. It has little to do with what is in the convention and what it would actually do. Rather, it has become another test vote for Republican Senators at risk of being "primaried" in the upcoming election by candidates more right-wing and / or paranoid than they are.
The two main "issues" with the convention itself are, as Collins correctly notes, about sovereignty, and parental rights. Or, to put it more plainly:
1. Certain very conservative Republicans have a long-standing distrust of the United Nations, which by its very nature they envision one day imposing laws and changes on the United States. This disability rights convention is to them just another potential wedge for foreigners to meddle in our business, so they want Senators, especially Republican Senators, to vote against it on anti-UN principle.
2. Certain other (sometimes the same) very conservative and Evangelical Christian Republicans are afraid that a particular phrase in the convention opens the door for the UN to overrule what parents choose to do with their children with disabilities. It seems like one specific thing they worry about is that the UN will someday determine that homeschooling is bad for disabled children, and somehow use that to curtail homeschooling in the United States.
The first objection is just the latest version of a sort of "constitutional" objection that is as old as the UN itself. People of a certain political bent have never liked the United Nations, and distrust the notion of “international law” on principle. They are nationalists who believe that the United States should never in any way acknowledge any authority higher than our own Constitution … even symbolically or for practical reasons like diplomatic cooperation and world peace.
The second issue is a little more complex, but only a little. Homeschoolers, especially, (but not exclusively) Evangelical Christian homeschoolers, feel looked down upon and threatened by the education “establishment”. While some homeschool because they don’t like aspects of public education as it is practiced, others basically don’t like the idea of any “so-called experts” telling them how to raise and teach their kids. Since public schools generally don’t see it as part of their mission to inculcate religious values in children, some Evangelicals opt to take their kids out of the “system” entirely and teach them at home, something that United States law does allow them to do. A somewhat side group of parents have a different problem with schools. Since schools still often do a poor job of handling disabled children, some parents decide to give up trying to improve Special Ed through advocacy, and simply decide to go it alone with their kids, believing that they, the parents, know what’s best for for disabled children.
So, you have two groups of homeschooling parents, groups that only partially overlap, who hear government-type agencies talk about “the best interests of the child” and take it to mean that if some academics and politicians don’t like how they raise their kids, then the law will eventually force them to give up their authority over their children and subject them to an education system they don’t agree with and even fear. They see an international agreement like the CRPD as a stealth way to someday circumvent US laws that so far at least do protect “parents rights”.
Of course, the purpose of the CRPD isn’t to change how the United States deals with disability issues, but to bring other countries closer to how American law currently does. There’s no point in beating around the bush here; we’re talking quite often about Third World countries, and possibly Eastern European countries … which often have cultures with pretty outrageous notions about disability, and / or infrastructures where accessibility is unheard of. And even if down the line, someone were to try and bend the CRPD to make legal changes in US law, it is vanishingly unlikely to ever happen under our current relationship with the United Nations. The US has veto power in at the UN. The only thing we have ever done at the behest of the UN is go to war, and then usually because we got the UN to vote for military action in the first place.
Opposing the CRPD on these ground is high-level jumping at shadows. It is also an insult to the many Republican Senators who aren’t big UN fans, but see this convention as something worth doing. Worst of all, it has caused the United States to symbolically disavow one of the few areas in which we truly are more advanced than much of the rest of the world.
The other problem is that the stakes are so low, in a political sense. It’s just not a big enough deal to get anyone upset in favor of passing the ratification. That’s why someone like Gail Collins writing about it, and well, is so important.
Tuesday, February 25, 2014
“Growing Up Fisher” Followup and a TV Idea
This might be another light blogging week for me, because of other stuff I’m working on. For today I just have a couple more TV-related thoughts:
1. I forgot to mention yesterday that the pilot episode of “Growing Up Fisher” included a pretty good scene referencing guide dogs being excluded from some public places. The blind dad, Mel Fisher, is moving into a hotel because of his divorce. The desk clerk sees Mel’s guide dog and says he can’t be in the hotel because they have a “no pets” policy. Mel says it’s a guide dog, and the clerk just sort of repeats the “no pets” policy. That turns into a bit where Mel and his young son do what seems like a routine they’ve done before in instances of discrimination … Mel (a lawyer) cites the applicable laws, and Henry tells the clerk that his dad is a lawyer and will sue them “so hard” that the hotel will end up being named the Fisher hotel. All that snarky advocacy was pretty cool, but what I really liked was how the desk clerk heard them say guide dogs are allowed in “no pets” establishments, but its like the fact didn’t sink in. He just repeated the policy like what the customers said was some strange non sequitor. I wonder how often these cases of service animals being banned from places are situations where the staff literally aren’t processing what they are being told? I mean, maybe they get it the second or third time, (“Oh, I see what you mean!”), but by then they’ve already crossed that line into outrage territory, and next day we’re all blogging about it.
2. If someone in TV wants to try making a high-quality show about disabled people, they should start it out in some kind of nursing home or care facility, and focus on four or five youngish residents who each have a somewhat different disability, or combination of disabilities. One or two seasons could be an arc of them becoming friends, gradually realizing that instead of complaining about shit in the facility, they should try to move out of it. Then the rest of the series, however long it lasted, could show the gang living together in a shared apartment, helping each other deal with all the usual problems disabled people face. Of course a lot of the show would have to be about their interpersonal relationships, non-disability-related interests, their families, non-disabled friends, their sex lives, etc. I’m thinking all this will half-watching Season 3 episodes of “Girls”, so that’s another way to get the flavor of what I’m thinking about … i.e. there would be nakedness and swearing, but also Indie Music and feelings.
More about this another time, I think ...
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