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No Pity: A Community for People with Disabilities
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| GIR!!! |
[Jun. 19th, 2009|10:35 pm] |
| [ | Current Mood |
| |  calm | ] |
So I picked the wrong community to post in and can't figure out how to delete the post below. Can someone in charge of this community do it for me?
News for this community:
I've been suppose to use my cane, but I dread using it. I need to exercise more. Does anyone have a quicker way to build up strength in my legs so I don't have to use my cane when I go back to college?
Thanks.
♥ |
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| More To Me Than "She Can't See!" |
[Jun. 9th, 2009|05:47 pm] |
I don't know if this will help you at all, but I recently posted several entries on my blog that are from a chapel service I did at a Christian school with kids from 4 to 14. I presented during missions week, and part of what I talked about was how to relate to people who are different. I talk about how certain ways people treat me show me that they just see me as "the blind girl." Here are links to those posts.
CCA Chapel Presentation PT 1: Relating to People Who Are Different PT 2: More To Me Than "She Can't See!"
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| disability language - I am not my disability |
[Jun. 8th, 2009|10:31 pm] |
| [ | Current Mood |
| |  annoyed | ] |
I have noticed that my aide has a habit of referring to people like this: "She is a TBI," or "He is a TBI," and it is starting to really annoy me. She doesn't do that with any other situation, illness, or disability - only Traumatic Brain Injuries. She has a son with a serious ongoing medical condition, so I would think she would know better than to refer to someone AS their disability. But this has been going on for a long time. Today, I asked her if I could offer some constructive criticism, and she said yes. I told her that people really don't like being referred to as their disability, and that it feels better to be referred to as a person with a TBI. She didn't see the difference. I explained it at least 5 different ways, with examples, and she still didnt get it. Finally, she said that I am too sensitive about this, and obviously she can't talk to me about it anymore. And she was taught to say it that way by the agency. And that the receptionist (who has since moved to another state and is no longer with the agency) told her when she started working with me that sometimes I got really picky about little stupid things.
Oh, also, in her defense, she also works a second job as a medical assistant at an urgent care center, where she has maybe 5 minutes to see the people before the doctors come in. I do understand in that case how a person might be referred to as their condition. It isn't right there either, but I can see it happening. ("I have a nosebleed in room 3, a broken arm in room 2, and a stomach ache in room 4," something like that.)
But she never refers to people as their conditions unless it is TBI. And being a person with a TBI, it bugs me.
I was looking on the Internet for something to show her WHY it bugs me, so she will understand. And I can't really find anything that explains it right.
Can anyone help me explain this right? |
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| CALL TO ACTIVISM - Many people with disabilities to be excluded from accessible parking under propos |
[May. 30th, 2009|03:15 pm] |
(cross-posted, sorry if you see it more than once)
If you're in Australia, we need your help! Please spread the word. Copy as much of this post as you like.
The government is proposing a national harmonisation of disabled parking schemes. Sounds great on the surface, doesn't it? But they're going to throw independent people with disabilities (PWD) who aren't wheelchair or scooter users to the wolves. People who can walk without physical assistance from another person, with or without a cane, no matter how restricted their walking distance, will no longer have access to accessible parking.
Unless you intervene. Please, give your feedback to the government about this scheme, right now, and spread the word.
Harmonisation of Disability Parking Permit Schemes in Australia
You can email your completed submission to accessparking@fahcsia.gov.au or post it to:
Australian Disability Parking Scheme submissions (East Wing)
FaHCSIA
PO Box 7576
Canberra Business Centre ACT 2610
Submissions must be received by 5pm AEST Friday 31 July 2009.
You can read the full discussion paper in PDF here: "Harmonisation of disability parking
permit schemes in Australia". Alternative versions of the discussion paper are available from the call centre in Easy English, on CD, in Braille or in another language: 1800 630 740, 1800 555 677 (TTY).
Read on to hear about how this will affect real people. [cut for length]
( Read more... ) |
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| stair lifts |
[May. 25th, 2009|01:16 am] |
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Does anyone here have experience with stair lifts? Have you ever worried about falling off one or having it break when you're on it? I have never used one, but I hear they break easily and need maintenance often. Any insight would be appreciated. Thanks! |
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| any thoughts ?? |
[May. 17th, 2009|04:15 pm] |
| [ | Current Mood |
| |  curious | ] |
| [ | Current Music |
| | Skinny Puppy ~ Use Less | ] |
Near my bday, there's a collectors' thing (don't know what they're called)
Anyway, my favourite actor is going to be there. He’s been in what is, to me, the best show ever written. If I went I could meet up with people I "chat" to on the TV show's board, who I’ve had a great laugh with over the years. It’d be a treat for my 26th.
I live in a rural area so getting there would involve me getting up early (aaarrgh!). It's a weird set-up that involves a lot of queueing – perhaps almost all day –- me in my wheelchair that is -- with tons of people. I wouldn’t sit there to see God – the most I can hang about for after a gig is ½ an hr.
My parents would have to drive me there (I can't drive) come in with me & queue up for hours. Like nearly all my mates on the board, I fancy one of the characters he’s played like mad [my user picture is a subtle reference to one of our jokes on the board – you do NOT want to know!] but even though I find the actor sexy too I probably know/care as much about him in real life as he does about me.
Family & friends are worried I’d be disappointed if I go, either because I won’t see him at all or he won’t be how I imagined him if I do.
Any thoughts ?? Should I bother going or not ?? |
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| follow-up to earlier post |
[May. 11th, 2009|09:36 pm] |
| [ | Current Mood |
| | accomplished | ] |
I recently posted about a stupid, offensive article a hunger relief organization had written about a man who "suffered" from MS and was "confined to a wheelchair," and my complaint to them about it.
Well, today I went to their site for other reasons and decided to see if they'd done anything with it. Then, I wrote this:
THANK you.
I contacted your organization a few weeks ago concerned about the tone and specific language you used in an article about a man with MS. I expected, frankly, to be ignored or to see his story pulled off of the site.
Instead, someone thoroughly edited the piece and went even further than I asked. I am impressed, and I appreciate it enormously.
\o/ |
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| MS Walk 2009! |
[Apr. 18th, 2009|01:30 pm] |
| [ | Current Mood |
| | hopeful | ] |
Mods, I checked the community profile and figured this was fine. Please let me know if this is inappropriate and I will be happy to remove it.
I'm proud to say that I will be participating in the MS Walk of 2009!!!
Every hour another person is diagnosed with multiple sclerosis. For 20,000 people in Illinois and some 400,000 nationwide, that hour has already arrived. Each case of multiple sclerosis, a chronic and often disabling disease, is as unique as the people who have it.
It's not easy to pinpoint the cause of multiple sclerosis and so far, the cure rests on continued research. This is why I am writing to you: I need your help, generosity and support! ( Read more... )
X-posted to all_disability |
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| Gimp Weddings |
[Apr. 17th, 2009|10:08 pm] |
So....I'm getting married in two months. To a tall, dark, and devastatingly handsome AB man. I'm a paraplegic (broke my back 4 yrs ago) and he is 6'5. My question, for those of you in a similar situation or have been to a similar wedding, is what in heaven's name do you do for the first dance????
At the moment, my inclination is to skip it. I haven't been able to visualize anything that isn't plain...awkward. I've been to one wedding with a para bride and an AB groom but it was really casual and non-traditional. Dancing didn't come up. All of my friends are dismayed that I don't really want to do one because then we won't have a 'first song' and all that....but seriously. How is this done??
Thoughts?
July 1st, 2009 |
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| Arthritis Walk |
[Apr. 10th, 2009|11:08 am] |
| [ | Current Mood |
| | hopeful | ] |
(MODS: Please delete this if you don't think it's appropriate.)
Hi, all. To be honest, I've been avoiding writing this for a while. I know everyone has extra tight finances this year, and I feel a bit uncomfortable asking for donations to support my annual Arthritis Walk knowing that. So, here's what I'm asking of you all this year. In the past, those of you who've donated have donated $25 or more. I'm not asking that this year. If you could donate $1-$10, I would very much appreciate it. And if you can't, please pass this on to others you think might be interested in supporting the Arthritis Foundation by sponsoring me at the arthritis walk ( https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=301324&lis=1&kntae301324=F61246BF35D24E68A933857AB77E8D75&supId=125704049 ).
The Arthritis Foundation does a huge amount of good work related to autoimmune disorders: they actively try to increase general awareness about arthritis and other auto-immune disorders, they fund research, they lobby Congress, they host classes and support groups. But I support the Arthritis Foundation for a different reason: to try and pay off a debt to them that can never be repaid. When I was a kid growing up with Juvenile Rheumatoid Arthritis, the Arthritis Foundation paid for me to go to Arthritis Camp each summer. Those 6 days out of a year changed my life. Arthritis Camp is one reason I'm so comfortable with my disability today--and, as a result, I'm also comfortable with myself. Arthritis Camp showed me that I wasn't the only person in the world dealing with Juvenile Rheumatoid Arthritis, even though I was the first student with JRA at EVERY school I've ever attended (elementary, middle, high, and, as far as I know, even college). Arthritis Camp also taught me to be compassionate towards others. It also taught me the value of silence, of candles, and of deep listening.
That's why I walk each year. I walk in gratitude to the Arthritis Foundation, who for 10 years gave me the means to attend Arthritis Camp each summer.
If you can sponsor me in any amount, I would be very grateful. And if you can't, please forward this on. My donation page is: https://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=301324&lis=1&kntae301324=F61246BF35D24E68A933857AB77E8D75&supId=125704049.
Thank you. |
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| Calling all Manual wheelchair users - I have a question |
[Apr. 8th, 2009|11:16 am] |
| [ | Current Location |
| | work | ] |
| [ | Current Mood |
| | shaky just thinking of it | ] |
| [ | Current Music |
| | Absolute Radio | ] |
Yesterday I had an experience that has shaken me somewhat.
I just wanted to ask though if anyone has been pushed by someone who doesn't know what they're doing?
If it has, What happened?
( cut )
Thanks for any thoughts. |
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| I have a slight problem. |
[Apr. 7th, 2009|02:43 pm] |
My famaly (me, my uncle, my mum and my dad) are going to the war and peace show. This means alot of walking over grass. I love my famaly but I think i'm going to have a serious problem. My Mum and Dad will be useing mobilaty scooters, my uncle gets lost often and will be walking with my dad. Then theres me. I cant see to get around without help and if it gets sunny i'm going to be in alot of pain as well as not being able to see. I cant get a scooter to keep up with Mother dear as I cant see. I did have the idea of hanging onto the back rideing on a skateboard but that wont work over grass. I have completely diffrent dissabilaties to my parants and uncle and the lot of them together are drivieng me nuts. It would be great if my uncle could be trusted to walk me about everhwhere safely but he gts lost and confused. He needs someone that can tell when one of his attacks is about to startand knows when he'll get confused and can deal with it. I dont have that warning because its a visual one.
I have a feeling this will be a very long day out. |
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| how to survive Easter Sunday ?? |
[Apr. 7th, 2009|11:55 am] |
Hiya,
On Easter Sunday I’ll be off to my aunty’s. I’ll have to be in my other wheelchair – she doesn’t have a ramp up to her house (I’m not ‘round often enough for her to justify having one)
I hate sitting in my other wheelchair. Just so you understand the depth of said hatred, I’d rather go through a maze in a thunderstorm than sit in the damn thing. It hurts my back & I can’t push it.
I could push myself from my stereo to my sink, but my room’s quite small) I did manage to push myself once but I was too exhausted to do anything afterwards. & worse than that everyone was watching me, encouraging me, which I hate.
I used to be able to push a bit, but I was a child so I was much smaller & lighter & I had a child’s wheelchair. They’ve seen me do it once so they insist I can still do it
So when I’m there, people have to bring *me* drinks/food (they have to anyway but at least if I’m at home I can get myself a glass of water if need be) My aunty goes on & on .……& on …. so the last time I was round hers we were there until quarter to 9 at night – we’d arrived at 3pm !!
When I’m with a group of people, even when I know them really well, I never have a clue what to say (most of my relatives on my dad’s side had the same problem & so does my dad; my granddad on my dad’s side never liked to go anywhere because he preferred being at home. He’d turn up for mum’s cooking, then want to leave.)
Somebody will ask me what I’ve been doing, as if they think the answer will have changed. (“Looking forward to the new series of Ashes To Ashes isn’t even worth saying.)
I luv my relatives dearly, but I really prefer them to come to mine [they mostly do anyway] it’s so much easier for me than the other way round, but they seem to have the idea I don’t really want to see them.
Any advice on how to survive what should be a happy occasion ?? |
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| I'd love to have a real graphic design job |
[Mar. 28th, 2009|01:49 am] |
| [ | Current Mood |
| | aggravated | ] |
but am I wrong because I refuse to get up at 3am every morning if I did get a job?
I've had my degree since last May, and my job search so far has been unsuccessful (not sure if it's my inexperience, not-so-great portfolio, or the current state of the economy). After being unemployed for so long, having a regular job would be great-that's not what I worry about.
What I'm dreading is the prospect of very long and exhausting days because of the way the city's transportation for the disabled operates. If a job starts at 8am there's a real possibility that I'd have to be up by 3:30am for a wheelchair van pickup at my apartment no later than 5 and either a 2 or 3 hour ride to work, or getting to work very early and stuck sitting around waiting for 2 hours because it's way before anyone else would be there, or worse, after all that, still barely getting there on time or being late, and in the afternoon either leaving right at 4 but never sure if the ride home will be 20 minutes or 2-3 hours, or else having to sit and do nothing during a 1 or 2 hour wait on the van for that return trip, plus the prospect of the long ride anyway. There are a lot of disabled persons who have lost jobs because no matter what they've done to "outsmart" the van service, they still couldn't get to work on time often enough and had to be let go. The short version of it is that there would be no time for anything else because I'd be working, riding around a lot and waiting for rides, and having to spend almost all free time at home trying to get enough sleep to deal with having to start the day so early. No time to really do anything that's not totally work or disability-related, including my independent graphics and digital art, or writing I want to do later on.
I'm just so fed up with the way local paratransit does things- not every day there's a problem but it seems like more and more any trip that's not "official business" gets a lower priority or else they're a bit too cavalier about how a technical problem with a van might inconvenience someone.
The "priority" isn't anything official, but there's a perception that sometimes there's preferential treatment of clients who only travel for disability-related reasons vs. those who travel to things like classes, jobs, and social events or "fun" things. It was something I started noticing a few years ago when I'd be late for class a lot or having long rides while other clients never seemed to be forced to wait or to leave 3 hours early for everything, because their activities that day were disability-specific. The short version of it is that over the past several years, the service has morphed from a general-purpose transportation service for all disabled persons in the city into a geriatric VIP taxi service, the special bus for group home residents, and the poor man's ambulance.
It used to be that most of the clients were high-functioning people, and many of them (myself included) were traveling in the morning to things like jobs or college classes.
However, during the time I was working on my graphics degree though (2003-08) I never saw the younger higher functioning people like I did in the 90s- I'd be the only one on board trying to get to the local community college, and I'd have to be out the door by 6am even when class wasn't until 9 or 10. Either I'd be on campus too early or else I'd have to ride around town for 2 or 3 hours while the van picked up more people, took them *straight to their destination*, heading back out to do that a few more times, then and only then, after everyone else had gotten a quick 15 or 20 minute trip right where they were going, would I be taken to the college, barely on time or late. The people running the transit authority swear on stacks of religious texts that there's no preferential treatment for anyone, along with the standard smug and condescending lecture about how it's a shared ride service. Yeah I get that- but I'd believe it more if *everyone* was inconvenienced equally! I've noticed a pattern of what seems like paratransit (and other services and resources to various degrees) being *less* accomodating of higher-functioning disabled person's- wheelchair users or visually impaired persons for example- compared with the way elderly clients or those with cognitive or developmental disabilities never seem to have to ride so long and never being left behind for being too slow getting out to the van, when I've been left behind many times because a driver needed to give my 5 minutes to the slowpokes at the next pickup so on those days I'm out of luck because I took more than 30 seconds to get out to the van. Or else just drove past my apartment without stopping but calling it in as a no-show.
I am *not* questioning anyone's right to be out in public or their right to use the van service, but am I a jerk for being fed up with certain types of disability seeming to get "accepted" more than others in terms of who has priority?
And besides the *long* hours I'd have to devote to traveling around town, I also dread those mornings when passengers are screaming and/or throwing a fit because "their" trip was made oh-so-unpleasant because it took too long for the driver to secure my wheelchair.
And some mornings vans have smelled like they were driven through a sewer because some passengers can't be bothered to bathe.
What I'm describing wouldn't happen every single day, but I've had enough experience to know it would happen way too often. Many times, when I was still going to class, I'd start a semester with being able to leave at reasonable times (6:30am pickup at home for an 8am class) and never taking more than an hour to get home in the afternoon, only to have, by midterm, the morning pickup slowly shift to a 5:30 pickup (sometimes without being told in advance) and the 2 hour (or longer) trip home, and that would be the norm for the rest of that semester. There's a tendency for the service to go through cycles where you might have weeks of reliable and convenient service only to have them shake things up- shuffling around the route assignments, which drivers are assigned to particular routes and shifts, and which clients get assigned to what vans on those runs. For me that's meant weeks of decent service followed by even more weeks of being the sole individual passenger on a van that's transporting several people at a time to a work center for the mentally challenged or several elderly persons to one adult day care facility.
A few drivers have admitted to me that they see what's going on but can't do anything about it, and have confirmed that I wasn't the only student having a rough time trying to get to and from classes, and have confirmed that indeed they don't see as many higher-functioning people using the service as there were several years ago. One driver recently told me about how he and the other drivers feel bad for the clients who need to get to classes or work in the morning- and admitted that it's routine to deal with a very irate person because they have to start every day with so much hassle- leaving so early, never being sure when or if they'll get to work or class, and getting home late at the end of the day with no time to do much of anything because they've got to be asleep very early to be ready to start the next day at 3 or 4am.
I know it's never personal but sometimes I get the feeling that we as disabled persons are expected not to complain or expect to be able to be independent and do what *we* want but rather accept all the hassle and extra inconveniences as the price to pay for daring to do things that "normal people" do. Make being disabled the *only* thing in life, and paratransit will always be an easy ride. Try to do things that only serve *your* agenda, and you better expect to ride all day and never be anywhere on time.
anyway-
If I focus on pursuing my own work- web design along with the digital art and graphic design- I'd be able to make the full commitment to it without having to worry about being constantly stressed out and physically worn out, and not worrying about being totally burned out only a few months later. I'd still have time to get out and network with the creative people I've been meeting over the past few months, plus working from home means I could get an early start each day and not feel rushed to finish something before the home health aide arrives in the afternoon. From a money standpoint, I'd be able to gradually build up an income and slowly save up extra money so that I wouldn't take such a huge hit when assistance would be phased out, compared with what a lot of people have had happen to them when they start working- lose assistance before they can afford to be without it, or else the job sometimes pays not much more than whatever their disability check was each month.
I have well meaning family and friends encouraging me in my job searches but not seeming to get it when I explain why I'd rather pursue independent work if possible, even when I re-tell my explanation about how all the crap with transportation would make having any day job suck like the whole galaxy turned into black holes, but somehow it sounds to them like I'm trying to rationalize a scheme to avoid a "real job" just because I can't deal with what they think are only minor hassles. I know a lot of creative deal with the similar "but that's not a real job" arguments and similar conflicts trying to explain that writing (or whatever else they're really passionate about vs. the "day job") is in the long run what they really *want* to do and are confident enough to pursue it.
Do I sound like I'm trying to get a pass to be a slacker or do I sound responsible and committed about it? ;)
sorry if I sound like a total jerk.
my site: www.simonboothstudios.com |
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| Resources for learning to cope with 'new' disability? |
[Mar. 11th, 2009|05:28 am] |
Brief background: I have severe Psoriasis and Psoriatic arthritis. They both turned up when I was about ten, and while the psoriasis has maintained the same level of awful, more or less, the arthritis has been steadily gradually getting worse. I'm 29 now, and I have arthritis in my feet, both ankles, one knee, one hip, my lower spine, arthritis-related costochondritis, a messed up shoulder/neck that might be arthritis or might be from a car accident, probably both, and arthritis in both wrists and all of my fingers. Probably also random other pains are related, because psoriatic arthritis can cause pain in tendons and stuff like conjunctivitis. Joy. (Psoriasis, for those unaware, is an auto-immune disease, not just a skin thing. So the arthritis is a function of the auto-immune problems.)
On top of that, I also get migraines, have perfume/chemical sensitivities, and a lovely selection of mental health issues. (Because, you know, shitty skin and shitty joints are not enough!)
Anyway, you would think after nearly 20 years of this crap, I would have come to terms with things. But no! Part of my brain persistently holds out hope that if I do the right thing or take the right drugs, all of this stuff will magically clear up and I will be able to do whatever I want, without worrying about if my body will put up with it. (Like being more physically active - I'd love to go hiking with my dog or be able to ride horses again without worrying about how many days it'll take to recover. Heck, I'd like to be able to sit in a car for 6 hours to drive to visit relatives without worrying it'd fuck up my back so badly that I'd end up spending two weeks in bed, like the last time I tried it.)
It has dawned on me recently, however, that all in all, that's a pretty unrealistic hope. Yeah, there might be some promising medical research, but I can't live in neutral waiting for them to come up with something to re-program my immune system. And I'm having a REALLY hard time coming to grips with that. I kind of just want to curl up and abandon all hope. (Reading web pages mentioning how debilitating arthritis in the lower spine can get probably wasn't a great idea, either.)
I just discovered this lj group (no idea why - I see people here I've known for YEARS) so I am hoping you guys might have ideas or suggestions that will help me figure out how to cross that gap between the things I WANT to be able to do and the things I CAN do, in a way which I will be, if not satisfied, then at least not feel like life is pointless and I might as well take to bed and give up going to college[1], getting a job, doing things I enjoy, etc.
P.S. bonus points if anyone has suggestions for things for my dad to read about time/pain management and chronic health issues. The spoon thing didn't really work for him, and as I live at home right now it causes a lot of unnecessary stress that he doesn't understand how I manage my life. (He tries, but he doesn't really have any significant health issues, so he really doesn't get it.)
[1]- I am currently doing undergrad, due to a rather unusual life path. |
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| Equal rights seems like a grand idea if you ask me... |
[Mar. 10th, 2009|07:26 pm] |
| [ | Current Location |
| | Norway | ] |
| [ | Current Mood |
| | busy | ] |
Hi,
a petition was just started by the European independing living movement that I hope you will all sign. It's centered on Europe, but I hope that won't stop anyone! Here's the text.
We urge governments and the European Parliament to:
* Act now: Stop inequalities, Stop segregation
* Human rights for all
* Personal assistance for all
* Make article 19 of the UN Convention a reality
* Start consulting with organizations run and controlled by disabled people with experience in independent living
Sign it! |
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| Moderator post and apology |
[Mar. 9th, 2009|10:14 pm] |
| [ | Current Location |
| | Local 50, on the sofa | ] |
| [ | Current Mood |
| |  tired | ] |
| [ | Current Music |
| | Harry Potter and the Chamber of Secrets, on TV | ] |
First of all, I'd like to apologize for my general bitchiness in my last post. I'd received several messages about the problems in the community, and was a bit flustered, but that's absolutely no excuse for my behavior, and I am sorry.
Second, I really really appreciate the feedback I've received on what to do about the abuse of the anonymous option. As per the recommendations of most of the commenters, I've turned on IP tracking and screening for anonymous comments. Let's see how that works out.
Many thanks for your patience and your feedback.
-Rachel/![[info]](http://l-stat.livejournal.com/img/userinfo.gif) tikva |
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| covers for elbow crutches |
[Mar. 6th, 2009|10:19 am] |
| [ | Current Location |
| | my work | ] |
| [ | Current Mood |
| |  okay | ] |
| [ | Current Music |
| | Absolute Radio | ] |
Anyone in the UK know where I can get hold of some covers for the cuffs of my elbow crutches?
The plastic ones are driving me bonkers. They're not quite closed-cuff, they have a small gap (kind of triangular-type ends). Am I making sense?
Sor if anyone knows where I can get some I'd be intgerested to hear from you.
Is there a better place to post this by the way? Or will here be ok?
Thanks Much
Erica. |
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