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ipod help ?? [Dec. 14th, 2009|02:09 pm]

call_me_lovey
Hiya,

I luv all sorts of music, from Steeleye Span to GNR, & my family keep trying to convince me to get an iPod, even stretching to getting me something sparkly to decorate one. Their thinking is if I can use a mobile/laptop I can use an iPod.

In-ear headphones fall out of my ears, ones that go over your head fall straight off. I was advised not to use headphones because I’ve had countless itchy ear infections & they seem to make it worse. I REALLY struggle with fine movement & tend to jump, but I had a go on someone else’s iPod anyway & the buttons were so small it took me about 1hr to manage to play one track !! I’d need MASSIVE buttons. I grew up with tapes & cds & find them far easier to use

In Respite, the male carers seemed fascinated by my stereo & were moving it about, switching it on/off when there were FAR more important things that needed doing (for other people as well as me) & having an iPod/iPod-like gizmo would mean I wouldn’t have to worry about that. I’m meant to get 3 weeks per yr but don’t for some reason (the little I do get is enough for me – I loved going up to 18 y.o. but over 18 is awful – the TV in my room didn’t even have freeview & I NEED my Whedon fix !! & that’s not even the worst thing I had to go through)

If I’m only going to take the iPod/iPod-like gizmo to Respite I can’t see it being worth the money. I was swayed by the idea of a shiny one, but it’s pointless getting one/someone getting it for me just because it’s shiny. I’d also get stressed if it broke/I couldn’t use it. Do any of you have/have any of you had iPods/iPod-like gizmos ?? How did/do you get on ??
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(no subject) [Dec. 9th, 2009|08:20 pm]

chicleeblair
Hi all!

My name is Chelsey. I am a senior at Oglethorpe University in Atlanta, Georgia. I have a rare form of Ehlers Danlos, which leads to many fun things, mostly skin issues but also mobility.

I have been offered an internship with the Royal Association for Disability Rights for three months this summer, in London. I am looking for grants/scholarships to fund this, as I am also going to grad school in the fall and will probably need loans for that.

Do any of you lovely people have any ideas of organizations I could look into?

I'm legally blind uncorrected, but not a wheelchair-user so that eliminates some things...
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UGH Airlines [Dec. 3rd, 2009|07:40 am]

jessiedwheelie
I travel all the time and have learned to expect some less-than-stellar treatment from certain airlines, but these two stories take the cake. For the life of me, I can't figure out why the guy in the wheelchair actually let them check it at the front. I'd have opted to miss my flight. I have zero trust in airlines when it comes to mobility aids.

Paralympian forced to crawl to airline gate


Blind Couple Stranded by Airline


Definitely disappointing to say the least.

Oh hey, found two more!

WTF, airlines, WTF.



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December 3rd = International Day of Disabled People [Dec. 3rd, 2009|03:15 pm]

lisy_babe
[Current Mood | cold]

Yeah, OK, so the UN renamed it the medical modelised International Day of Persons with Disabilities a year or two ago. So I'm starting off by posting the link to my fave guide to disability language.

Yes, I'm aware that American English speakers generally prefer "person first" language, but that doesn't make the term "persons with disabilities" any less medicalised/individualised in origin.

The EHRC has used today to launch an inquiry into disablist harassment in the wake of the Pilkington murder/suicide.

Eddie Izzard tweeted that it's exactly 1000 days until the 2012 Paralympics (even if he did spell "Paralympics" wrongly). Also on Twitter there's the #intdayofdisabled hashtag.
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Treating disabled people like human beings = bad customer service? [Nov. 29th, 2009|04:18 pm]

rainbow_goddess
A few years ago I was working in a coffee/sandwich shop where I served coffee, baked goods and sandwiches to people. I was the only one there most of the time.

One day when I was on my own two women came in together. One was in a wheelchair, and one was not. The one who was not in a wheelchair ordered first. The woman who was in a wheelchair then attempted to give me her order, but the other woman kept interrupting her and talking over her, and kept trying to order for her.

The woman in the wheelchair would try to say something like, "I'd like to have a roast beef sandwich and..." and the other woman would say, "She'll have a roast beef sandwich" as if I hadn't even heard the other woman.

I finally interrupted the woman who was talking over the woman in the wheelchair. I said, as politely as I could, something like: "Ma'am, I've already taken your order. You're having (whatever she had ordered). Now I'm trying to take your friend's order."

The woman said, "But I've TOLD you what she's having!"

Finally the woman in the wheelchair yelled at the other woman something like, "Shut up and let me order already!" and was finally able to give her order.

The strange thing is, I mentioned this incident on a customer service community, and people told me that I gave these women bad service, that I was rude, and that I should have let the woman who was not in a wheelchair just give the order for the woman in the wheelchair rather than saying anything.

Comments?
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(no subject) [Nov. 26th, 2009|06:14 am]

flamegirl_kitty
Photobucket


Angela Hartlin's memoir, FOREVER MARKED: A Dermatillomania Diary has finally been released! Please join her Facebook Fan page to spread word about this skin picking disorder along with her experiences with it.

People with this disorder have traits of Body Dysmorphic Disorder and usually suffer from depression. It is an Impulse Control Disorder that is fueled by high levels of anxiety. The first few pages can be previewed at the Lulu.com site, which includes a better definition of Dermatillomania.

Even if you do not have Facebook, the prices are listed there for Canadian, American, and International buyers. If you do, please spread the word of the fan page to everyone on your friend's list, even if you have to tell them that you're spreading the word for a friend! We need to raise awareness about this silent disorder and help break the stigma on mental health in general. You never know who is suffering in isolation from having this condition.

Please e-mail forever.markedATyahoo.ca if you want to purchase from Angela directly; she offers a lower shipping price than Lulu.com does. Include the country that you live in and she can send you a quote. She ships the day she gets a payment (or the day after), then sends an e-mail to confirm that it was sent.

Thank you. <3


Photobucket
Link

(no subject) [Nov. 24th, 2009|10:01 am]

azrielsdaughter
There's not a lot of support on LJ specifically for this, so I apologize if this doesn't fit within the confines of what the community is 'for'. I'm having trouble finding support for this online and in 'real life', beyond patronising "You just don't get it" reactions of his family.

I've been dating a guy for 2 years and 6 months. We live together now. I do love him to pieces, though lately due to various issues related to this entry that has been waning a bit.

I am clinically depressed, and he has tourettes/OCD/ADHD.

In case this gets wordy- How does one cope with this sort of relationship? )

LONG explanation short, my overall question is this: Is there anyone here who has tourettes/OCD/ADHD, who can help me understand what is a tic and what is just bad behavior? How to deal with his tics? How we can cope with this and still be a solid couple?

So much info on the net is for parents of tourettes kids, not a lot of support for significant others. :\ It's probably also pertinent to add that I don't think he's ever seen a neurologist for these mental issues, only psychiatrists and speech therapists.
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Odd request [Nov. 22nd, 2009|09:36 pm]

leastconcern
[Current Mood | cheerful]

So, I feel a little silly asking this, but I was wondering if anyone has copies of some disability rights books that they are no longer needing or anything. I have been trying to find them off bookmooch, swaptree, etc, and they just aren't there.

Some titles I am really interested in: The Medicalization of Society by Peter Conrad, Claiming Disability by Simi Linton, Make Them Go Away by Mary Johnson, No Pity by Joseph Shapiro.

If you come up with any more titles, please pitch them and I will add them to my growing wishlist!
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HELP !! [Nov. 20th, 2009|05:41 pm]

call_me_lovey
Hiya,

Close relatives reckon I've got Aspergers.

-- I get irritable (more than usual) if I don't eat/drink when I usually do.

-- the one time I had a friend from school over, I played while she watched TV in the lounge

-- I drink SHEDLOADS. Literally loads (that's before you count the coffee)

-- I get really into things. (thank god for discussion boards or I'd be a very boring woman)
For example, my favourite tv series is coming back on soon, & the idea of my favourite character [see icon] being killed off (there is a good chance he might be -- the actor who plays him is fed up with the part) makes me so stressed that if anyone mentions it it ruins my whole day. I'm making 2 tribute cds to him -- 1 if it happens, 1 to get over it !! -- & I've even made up a song about the series being ruined if he "dies". All this for somebody who isn't even real

-- when I'm anxious/upset I tend to rely on one thing to cheer me up (see above)

-- My musical tastes are unusual for my age. Dad loves his blues & his protest/folk songs & he played them to me since I was young. I'm always nicking borrowing his cds. There aren't many young women who like that type of thing but I luv it.

-- I didn't cry when relatives passed but when I hear/play certain songs I cry as if my heart will break

When I asked the nurse at college if she could test me she burst out laughing & said I interact too well & my sense of humour was too good !!

Any ideas ?? Is it something you can have traits of/is it something you have or not ??
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accessibility and tabletop gaming [Nov. 11th, 2009|01:08 pm]

kynn
I started a series at my Dazed (save ends) gaming blog about Accessibility and Tabletop Gaming -- specifically, roleplaying games such as Dungeons and Dragons. So far I've looked at the accessibility of rulebooks and of dice, and I've got several more posts planned since it's not a small topic.

I'd welcome feedback, insight, and personal experiences from anyone who'd care to comment!
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Us vs. Them [Nov. 10th, 2009|01:38 pm]

funnel101
[Current Mood | contemplative]

I think there's a danger inherent in identifying with a group in that the world can then be divided into US (members of the group) and THEM (people who aren't members of the group). This is particularly tempting within groups that have faced oppression by another group. This danger is that the group's identity can center around the oppression from THOSE people instead of centering around characteristics of the group (which would include the oppression, but as ONE characteristic among many instead of as THE defining factor).

For example:

Armenians are a group who suffered a genocide under Ottoman Turkey that has yet to be acknowledged by the current Turkish government.

vs.

Armenians are an ethnic group with roots around a specific area near the Mediterranean, who tend to be predominantly Christian, enjoy a mix of Mediterranean food (hummus) with ethnic food (piazz), enjoy a certain kind of music and speak a certain language, who have a history both as a diaspora ethnic group and a group tied to a specific location, etc.


This is actually a problem I have with many Armenian lobbying groups, whose only focus seems to be formal recognition by Turkey of the Genocide(s).

This can also be a problem within the disabled community, as we can too often lose focus of who we are without focusing on our oppression by able-bodied individuals. Instead of defining our group experience around the oppression we've faced (and note that I am not at all denying that oppression exists), it might be healthier to focus on who we are. In that light, I'd like to explore who we, the disabled, are in terms of where our limits come from, instead of who our oppressors are.

To be disabled means that most of our limits are bodily: whether physical, mental, or emotional.

I see two advantages to thinking about disability this way. The first is that it offers us an identity without making able-bodied people into a THEM. The second is that it gives us a way to relate to non-disabled people: they are people whose limits come primarily from without instead of from within (for example, from society, class, gender, finances, etc.). This way of thinking about it also offers a range: those who we would normally think of as able-bodied could have moments in their lives when they experience what it is like to be disabled.

These thoughts come from an email discussion I've been having with a good friend, who asked me some hard questions about my identity as disabled.
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help with research project? [Nov. 8th, 2009|11:33 pm]
latinanewschic
Hi Everyone,
I am a blind sociology major looking for people to interview for a study. I want to look at patterns of bloggers with disabilities, why you blog, benefits of blogging, reasons to write ETC. Your names and identifying information are kept confidential. I can do instant messaging or phone interviews which are 0.5-1 hour. If you are interested, my email is latinanewschic@hotmail.com or you can send an LJ message.

Thanks for your help!
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CP and qigong/tai chi [Nov. 8th, 2009|06:57 pm]

vijeno
Hi,

I'm chris, a spastic diplegic from vienna, austria.

I just started looking into qigong and tai chi. It seems to me there is vast potential there for dealing with CP.

So, if anyone around here has any experience in that matter, I'll be delighted to hear from you!
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Benign Congenital Hypotonia [Nov. 7th, 2009|07:11 pm]

agateophobiac
[Current Mood | lonely]
[Current Music |Uprising- Muse]

hello, my name is shelby, but that is besides the point

does anyone know someone who has BCH? Kinda stupid question, but im looking for someone to talk to
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A disabled group under attack from organized crime [Nov. 5th, 2009|05:23 pm]

fpb
Calabria is the Italian region most affected by organized crime. (There it is called, not Mafia, but 'Ndrangheta.) This has repercussions in all sorts of areas you would not imagine, such as the struggle for the rights of disabled persons. There has been an attempt on the lives of two disabled leaders, one of whom, Nunzia Coppede', noticed on time that the brake cables in her car had been severed. If she or the other (unnamed) person had taken their car, they would probably have suffered a grave accident as soon as they needed to brake. The reason seems to be that their voluntary group has been given the use of a building confiscated from local villains. Anyone who wanted to show support to these good and threatened people can write to one of these two e-mail addresses: fishcalabria@gmail.com, or info@superando.it.

P.S.: please do what you can to spread this. Everyone is welcome to copy and publish it on blogs, bulletins, etc.
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xmas presents [Oct. 25th, 2009|05:10 pm]

call_me_lovey
My cousins have bought me something for Xmas every year since I was little. I used to see them loads, but now it's easier for them to see me than me going to see them, so we don't see each other very much now. (It's also easier/less stressful for me to get my Xmas shopping out of the way.)

When we meet up we really get on. They've always been very understanding & got things I actually wanted/could use & I imagine it won't change this year.

Should I get them something if/when I don't see them ??

What about carers ?? Some of mine might as well be close relatives (they even got me something last year that I'd only said I liked in passing) but I wouldn't see them if they weren't paid. I'm unsure what to do.

Any thoughts ??
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TV and disabled people. [Oct. 22nd, 2009|12:32 am]

nahzee
I have a bit of a recent gripe to air on the matter. I love CSI- all of 'em, and I watch them fairly regularly, if not every episode.

CSI NY spoilers and talk of being disabled on TV ahead.  )


 

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Writers with disabilities Comm [Oct. 19th, 2009|03:34 am]

in_excelsis_dea
[Tags|]

National Novel Writing Month is a challenge to write 50,000 words within the month of November. It's equivalent to 1667 words a day. Friends and I realized that not only was there a complete lack of NaNo groups that catered to disabilities, but that there was a lack of general writers with disabilities groups. So we made one.

[info]write_able is open to all who identify as disabled and writers. While we're pretty NaNo themed at the moment, after November we hope to keep going as a general writing/discussion group. If anyone is interested, feel free to join.
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Excerpt from blindness sensitivity presentation [Oct. 17th, 2009|02:53 pm]

carmellasquest

Presentation Given on Feb 24, 2009 

For more information on Covenant Christian Academy, visit
http://newcovenantchurchministries.com/?page_id=5
 

I bet most of you get so used to using your eyes  you don’t think too much about people who can’t see and what life might be like when your eyes don’t work. That’s okay. Sometimes, I forget that not everybody gets to have a special helper dog with them everywhere they go and that not everyone’s computers talk to them and that not everyone can tell what shirt they’re pulling out of the closet just by touching it like I do. We all get used to how we do things. That doesn’t mean your way is better than my way. It just means I have to use my ears and hands to do things instead of using my eyes like you do. Lots of times, when we do missions work, we are around people who do things differently than how we're used to doing things. They look different and act different and talk differently. Its not that we're always right and they're wrong. It just means   we don't all look or act or talk the same. I want to talk with you a little about being around  people who are different from you in some way.   I'm going to tell you about how people act around me sometimes and what I wish they would do instead.

 

Its no secret to me or anyone else that I'm blind. I have this dog wearing a special harness who goes everywhere with me.  My eyes look different and  most people figure out pretty quick that  they don't work right.  The thing is, “blind is just one word that describes me.  Other words are stuff like, "Christian," "writer," "singer," "counselor," "friend," "aunt," and lots of others. I don't like eggs or mornings. I   like to make jokes.  I drink sweet tea. I meet really nice people all the time who  just take the blindness part as one piece of who I am and are interested in me as a whole person. They might feel a little surprised or uncomfortable at first, but then they get over it. They don't forget I'm blind, but they don't make it a big deal either.  Those are the kinds of people I like to be around. Some people will get stuck on the "blind" part of who I am and stay  there. They'll never try and learn anything else about me. They realize I can’t see, and then they do some weird things.

One thing some people do is get scared because they’ve never been around someone who is blind before. They don't know what to say or do so they just kind of freak out and try to get away from me.   I’ve never understood that because blindness isn’t a contagious disease. You won’t go blind because you stand too close to me in an elevator. Just because someone looks different from you or does some things differently, that doesn’t mean you have to be scared of them.    They're just people, not aliens from another planet. They have thoughts and feelings just like you do. Different types of people makes the world a more interesting place. If we all looked and acted the same,   life would be really boring. That’s what I think anyway. Different just means not what you're used to. It doesn’t have to mean scary. When you meet someone who is "different" from you, you get the chance to learn something new.  

 

Some people don’t get past the word “blind” when they meet me because they judge me based on what they think they know about what its like to be blind. They think things like, "Blind people can't work," and "All blind people wear sun glasses," and "All blind people know how to play the piano and need to touch other people's faces."  I think touching other people's faces is weird and I don't do that. Sometimes, people feel sorry for me. They think being blind means I must be stupid or that I can’t do anything for myself. They think there can’t be anything worse than not being able to see. I think lots of things are worse. These people that feel sorry for me do funny things like raise their voices at me or talk really slow or talk to me like I’m a two year old.   I don’t like that stuff too much. I don’t know why they think not being able to see means I can’t hear either. I never have understood that one. My eyes don’t work but my ears work really well. I don’t like for people to decide how smart I am or how much I can do before they even talk to me. They think they know, but they don’t. I think they’d be really surprised if I told them all the things I do because mostly it’s the same things they do. I live in my own apartment, go to work, check my email, do laundry, and all the usual boring grown up stuff. I  clean up after my dog, like going on dates with nice guys, and  watch TV, too.  That's another thing, its okay to use words like "watch" and "see" around me and other blind people. We use those words, too. 

 

I think its really important to get to know people before we judge them. I think it would be great if we could all be open to learning about what we don’t understand. That means getting information and taking the time to learn about people we don’t know. If we don’t do that, we might just get in our minds what someone is like and not take the time to find out if we were right or wrong. That’s sad because both of us might miss out on making a new friend. Missions work is about trying to look past what we may have always heard about certain types of people and trying to find out what is true and what they’re really like. A lot of times, we find out what we always heard isn’t really how things are.

 

Another thing people do that keeps them from getting past the word “blind” is to just start wondering how I do everything.  These people are really interested in that part of my life because  they can’t imagine how they would do all kinds of things if they couldn’t see. They're curious. I get that and know that I could be the only blind person they've ever met. I don’t mind explaining things or answering a couple questions. I’d rather people ask me instead of guessing because they’ll usually guess wrong. If someone is asking nicely, I appreciate that they want to understand me better. But sometimes, all someone wants to do is ask me about being blind. It starts to seem like what its like to be blind is all they're interested in knowing.  When I’m telling them how I do something they ask about, I try and say something about my job or my writing or something else to remind them there are other interesting things about me. 

Most of the time people will pick up on that and ask about some of the other stuff I bring up. I also try and ask people questions about themselves.  That can lead to an actual conversation. But some people  just have to  keep coming back to the "You can't see, so how do you...?" questions. After a few of those, I start getting bored. I start to think, “There are so many other things about me that you might think are really interesting, but you won’t know because you’re only asking about this one part of my life.”   That makes me sad sometimes and sometimes, it makes me mad. When I get mad, I want to say, “If you want to know all about being blind, go to the library and check out a book about it, or do a google search.” I want to say, "I'm sorry, are we having a conversation, or are you interviewing me for  an article about living with sight loss?" The nice thing to say is, "I feel like I'm being rude just talking about me. I haven't learned anything about you. I'd like to know something about you now." Sometimes, that works. 

 

When we meet people who do things differently than us, I think its okay to nicely ask questions because we want to understand them better, but its important to focus on more than just what makes them different from us. Its okay to try and find out what we might have in common with them, too. Some people come up and start talking to me about dogs. They’ll say they like my dog and then they start telling me about their dog and then we’re talking about something we both like. I ask   questions about what kind of dog they have and how old it is and what its name is and we’re having a conversation, not just one person asking all the questions and one person giving all the answers. Then, maybe we find out we both like pizza or   the same kinds of music or something. That’s how people start becoming friends. Sometimes, we think, “That person is so different from me. I bet there isn’t anything we have in common.”   Lots of times, we’re wrong about that but we don’t know because we don’t try and find out. 

 

I bet y’all have heard that verse from the Bible that says, “Treat other people the way you’d like to be treated.” We call that the Golden Rule. I think that, if more people would think about that when they’re around me, it would be easier for them to decide how to act. Most people, no matter where they’re from or how old they are or what they look like, want other people to be nice and friendly and want other people to get to know them. Pretty much everyone wants other people to let them be themselves and to accept them for who they are. That means you, me, someone who lives in a country far away, someone who has lots of money and someone who doesn’t have any money and people who can see and people who can’t see.

God made each of us and  we show His love by treating people with dignity and compassion. That goes for people we know and people we don't. It goes for people who  live near us and people who live far away. It means  we think of other people as  interesting and get curious about them and  appreciate how they are different while realizing we all have things in common, too. We all need food, water, clothes, and a safe place to live. We all need to see a doctor sometimes.  We all have families and people we care about. We all laugh and cry and we all need God.   Whether missions work is something  you do close to home or in a different country, I hope you'll always remember to treat people the way you'd want to be treated.     

 


 

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Is How I Use the Oatmeal in My Home Abnormal? [Oct. 9th, 2009|10:19 am]
mel_pa
[Current Mood | confused]

Monday afternoon my mom criticized me for using up the oatmeal to make my veggie loaves, the next day she criticized me for "using up ALL the 1.25 qt bottle of soy sauce in two weeks". Then she went on a rant about high blood pressure "from pouring soy sauce into (the oatmeal loaves) and "I've been noticing you--you use oatmeal to make THOSE THINGS OVER AND OVER AGAIN--you're going to end with health problems!

Health problems from oatmeal? Mom didn't buy the soy sauce just two weeks ago, it was over a month ago before she left for a visit to her family. She insists she had the soy sauce two weeks.
When ever I use the soy sauce I try to use as little as I can, not just because of the sodium content , I live with others in the house.

Mom said she "wasn't placing blame on me", but what else can I think?

The oatmeal is the only high fiber grain in the house so there is very little I can really make. "I've been noticing you--you use oatmeal to make THOSE THINGS OVER AND OVER AGAIN--you're going to end with health problems!" How is this pathological behavior?

What can I do?
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