[SAFESPACE] Support thread for people with disabilities

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[SAFESPACE] Support thread for people with disabilities

Postby Amarantha » Sat May 02, 2009 7:00 am UTC

Provoked by the cochlear implant discussion in the House MD thread, and inspired by the other safe space threads here in General.

I thought we could maybe use a space where people don't get to tell us we're damaged and must strive to be like them.

Also, if my Aspergian arse has broken any protocols in the creation of this thread, feel free to let me know, or move/rename/whatever it. Because an aspect of my admittedly minor disability is to spend ages researching and re-writing any serious-topic post, and still manage to express myself poorly or break a rule somehow :P
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Re: [SAFESPACE] Support thread for people with disabilities

Postby TheKrikkitWars » Sat May 02, 2009 7:20 am UTC

I'm dyspraxic, Whilst 18 years of bloodyminded perseverence has left me with better than average gross motor control (go overcompensation go!) I still can't produce a reliable signature, or handwrite in any useful capacity.

I occasionally show some of the behavioral traits if i'm put into a stressful situation that I can't get out of (this is normally actually with my mum, as she's the only person who I won't tell to STFO, or just walk away from, as I know that would *really* upset her, she means well, but often actually makes things worse by going "you're acting dyspraxic again", which has at least once get the reply "Well if you systematically ignore what I'm saying and block my coping mechanisms, what do you expect me to do, dance a bloody hullaballoo?").

Contovertial point:
Disablity is all about how disabled you let youself be. Ablism can be in the mind of a disabled person just as much as an able person. (Of course you have to be realistic, quadrapeligia for instance is pretty much impossible to overcome unless you recouperate some control.)
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Re: [SAFESPACE] Support thread for people with disabilities

Postby natraj » Sat May 02, 2009 7:23 am UTC

Sweet! A thread where I won't have to burn up all my energy explaining to ablist people that no, really, it's not okay to remove the bodily autonomy of people with disabilities just because clearly abled people know what's best for us?

Cuz I really was ready to bash my head into a wall. I don't understand how anyone can even think it is remotely okay to force people to undergo major surgery against their will, barring the hugely paternalistic douchey viewpoint that was being expressed there: that people with disabilities are incompetent to make decisions for ourselves.

ARGH.

Argh, argh, argh,

Okay, raging is over. Now I am going to proceed on to being happy for this thread. Rock on.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby mrbaggins » Sat May 02, 2009 8:38 am UTC

I probably won't come back to this thread, but I'm posting here to say that my brother has Aspergers Syndrome, I know buttloads about both it specifically and about Autism, and welcome any PM's that people may wish to send me on that topic. I grew up on a first name basis with Dr Tony Attwood, one of the foremost psychologists that deals with Autism and Aspergers, and you will be unable to offend me without trying to. So yeah. Ask away, but via PM.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby TheKrikkitWars » Sat May 02, 2009 8:54 am UTC

In tune with that; If anyone ever needs resources or information on Dyslexia or Dyspraxia, PM me, and whilst my own knowlege is limited, I might be able to hook you up with various people of significant experience and expertise.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby abitha » Sat May 02, 2009 9:23 am UTC

TheKrikkitWars wrote:Contovertial point:
Disablity is all about how disabled you let youself be. Ablism can be in the mind of a disabled person just as much as an able person. (Of course you have to be realistic, quadrapeligia for instance is pretty much impossible to overcome unless you recouperate some control.)


I think I at least partly agree, although a person with a disability is still likely to be disabled by the ablism of the people around them even if they don't have ablist attitudes themselves, if the surrounding ablism is strong and prevalent enough.

We were taught that the WHO defines impairment, disability and handicap as follows:

Impairment: Any loss or abnormality of psychological or anatomical structure or function.

Disability: Any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being.

Handicap: A disadvantage for a given individual, resulting from an impairment or disability, that limits or prevents the fulfillment of a role that is normal, depending on age, sex, social and cultural factors, for that individual.

Handicap is therefore a function of the relationship between disabled persons and their environment. It occurs when they encounter cultural, physical or social barriers which prevent their access to the various systems of society that are available to other citizens. Thus, handicap is the loss or limitation of opportunities to take part in the life of the community on an equal level with others.


In non-technical usage, 'disability' seems to be used as an umbrella term to cover all of these (probably because 'handicap' sounds a bit old-fashioned and negative), but sometimes it can be quite helpful to separate out the concepts. A large part of someone not being 'handicapped' is about finding a suitable niche in society, where whatever impairments or disabilities you have don't impinge on normal functioning, but this is easier for some than for others. Two people can experience vastly different levels of handicap from exactly the same impairment, so that one might not regard themselves as disabled at all, whereas the other might be severely affected, unable to work etc. Granted, this might be partly to do with their different mental attitudes, but it'll also depend on what niche of society they are in (e.g. An old lady who sits at home reading and rarely leaves the house, who develops bilateral cataracts that make her distance vision crap but slightly improve her sight for near vision (this is frequently the case for early cataract), probably won't consider herself disabled. Meanwhile, an airline pilot keen on outdoor pursuits who develops the same cataracts, will lose his job and his hobbies unless he gets them corrected surgically, and therefore the cataracts will be a serious disability for him).
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Re: [SAFESPACE] Support thread for people with disabilities

Postby wst » Sat May 02, 2009 3:03 pm UTC

While I don't have any disabilities personally, I have known a lot of people with disabilities (compared to most people my age), so this thread pertains to my interests.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby PictureSarah » Sat May 02, 2009 4:15 pm UTC

I feel kind of stupid posting in this thread, because my "disability" doesn't have much impact on my life at all, and I'm not even sure it's a diagnosable disability, but...

I think I have a learning disability that is math-specific. And it's gotten much worse as time progresses, if that's possible? I failed every math test from about 7th grade onward, I took Algebra I twice trying to understand it, and I dropped Algebra 2 twice because I knew there was no way I could ever pass it. Now it's to the point where I sometimes have trouble with phone numbers, I frequently have to have my fiance add up my Scrabble score for me, and last week I had to have him add up how many hours I had worked so that my boss could pay me. I think that crosses the line from "I'm bad at math!" to "There seems to be something wrong with my ability to process numbers." It's really deeply humiliating, especially since most of my social circle is made up of nerds who are very talented at math/science.

Does anyone know if this description actually does fit with any kind of learning disability? Or am I just really, really bad at math?
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Re: [SAFESPACE] Support thread for people with disabilities

Postby natraj » Sat May 02, 2009 4:22 pm UTC

There is definitely a math-specific learning disability that I know about; it is related to dyslexia and is called dyscalculia and involves the inability to properly process or comprehend numbers/arithmetic.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Mous » Sat May 02, 2009 4:34 pm UTC

I'm completely deaf in my right ear, and have around 50% hearing loss in my left. It's just irritating, not really disabling, because I constantly have to ask people to repeat themselves. When they found out I was deaf (I was around 7 when they found out, but I was born that way. So somehow for 7 years I managed to hide it... even faking my way through the kindergarden hearing tests) they offered cochlear implants, which my parents declined.
Being mostly deaf is probably the only reason I listen to black metal. It's the only thing I can actually hear.
I'm also going blind in my right eye due to macular degeneration (have I mentioned I'm only 18?), and I'm pretty sure by the time I'm 30 I'll get a stroke rendering my entire right side useless.

But all in all, I'm not really disabled.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby natraj » Sat May 02, 2009 5:09 pm UTC

abitha wrote:
Handicap is therefore a function of the relationship between disabled persons and their environment. It occurs when they encounter cultural, physical or social barriers which prevent their access to the various systems of society that are available to other citizens. Thus, handicap is the loss or limitation of opportunities to take part in the life of the community on an equal level with others.


You know, I think this is really key. I think it is what a lot of hearing people don't understand when they hear Deaf people (or anyone with disabilities; Deaf people are just the community I'm more familiar with) say that they don't really consider themselves handicapped. Cuz depending on what you're doing in life and what sort of community you are part of, having a disablity doesn't have to actually cripple you in life, and if you're part of a community where you're accepted and not being held back because of it, then it isn't generally going to have a huge negative effect on your life.

@PictureSarah: I totally just addressed the questiony part of your post and not the initial sentence and that was kind of brusque and I did not mean to be. My post should have been prefaced with the reminder that nobody should feel stupid for posting here. I am pretty sure there is not some kind of disability litmus test to make sure everyone passes some Disabled Enough test before they are welcome here.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby gmalivuk » Sat May 02, 2009 5:20 pm UTC

Even if you definitely don't have any disability, it's just as okay to post in this thread as it is for non-women or non-LGBTQ people to post in those threads. Just so long as people adhere to the safe space bit.

I also like making a distinction between disability and handicap. (And was about to go on and say how it means either can occur without the other, but then I decided that maybe non-disability related things that have the same social ramifications as handicaps could just be called barriers more generally. As in, Goodwill seeks to help anyone with barriers to employment, whether they be physical, mental, economic, or social.)
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Re: [SAFESPACE] Support thread for people with disabilities

Postby abitha » Sun May 03, 2009 9:31 am UTC

Mous wrote:I'm completely deaf in my right ear, and have around 50% hearing loss in my left. It's just irritating, not really disabling, because I constantly have to ask people to repeat themselves. When they found out I was deaf (I was around 7 when they found out, but I was born that way. So somehow for 7 years I managed to hide it... even faking my way through the kindergarden hearing tests) they offered cochlear implants, which my parents declined.
Being mostly deaf is probably the only reason I listen to black metal. It's the only thing I can actually hear.
I'm also going blind in my right eye due to macular degeneration (have I mentioned I'm only 18?), and I'm pretty sure by the time I'm 30 I'll get a stroke rendering my entire right side useless.

But all in all, I'm not really disabled.


Glad to hear that you are not disabled by it, but sorry to hear that you have macular degeneration at such a young age, that's pretty bad luck especially if you already have other sensory loss!

What makes you think you will have a stroke - just extra bad luck, or do you have a syndrome that would precipitate it?
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Re: [SAFESPACE] Support thread for people with disabilities

Postby zekone » Sun May 03, 2009 7:29 pm UTC

Well, where to begin.

I've had a chronic joint and fatigue issue for 6 years now (since I was 15-16), which severely impacts on everyday normal things. I use a combination of painkillers, joint supports, a walking stick, and going really slowly to help me get around. Sometimes it's worse, sometimes it's better. I can't stand up for more than a few minutes without something aching. Basically, it kinda sucks, but I have coping measures and things I do to help me do things - it's sometimes slower and/or more expensive (such as travelling), but I get by.

Sadly, the industry I work in is very anti-disabled people, which means I don't actually get much work. It's rather physically intensive, yet the job I do is all computer-y type things, so while I have no problems doing my job, it's very hard to get work in general, and a lot of the work is gained via contacts, which I have trouble making due to not doing the physical work.

That makes me very depressed at times. I also hate being around people, except my close friends, and have trouble interacting with people (not sure if that's part of an actual condition I have, or just my personality). I get angry at people I don't know really far too easily. I also get frustrated at myself, mostly due to my bad joints and the pain it causes, but also because I am dyslexic, and slightly dyspraxic.

My dyslexia/dyspraxia wasn't discovered till mid-way through my final year at university. While it didn't really affect my studies at all (I got a first, the highest possible degree rating in the UK), it was annoying to find out that troubles I had at school could have been addressed earlier. I have really terrible handwriting, poor reading skills, and slow mental processing speed. This usually manifests in me seeming ditsy and... well, rather stupid... sometimes, as I have real trouble making quick decisions - give me time to analyse a situation or a problem, and I usually find very creative and efficient solutions. Also, I suck with numbers, but loves maths. It's odd.

My combined disabilities do handicap me in my everyday life, but I generally find ways of coping. I by no means live the life I want to be living, but I enjoy it as best I can. My awesome boyfriend helps me whenever he can - physically - and has boosted my confidence no-end. But I want my independence, I want to be able to do things I used to - go camping, go for a nice long walk in the forest, etc. - and not be an achey mess after half an hour.

I get angry, upset, depressed, frustrated... and a whole load of other emotions. There is a history of chronic depression in my family - my grandma has had 4 nervous breakdowns - although I'm determined not to have depression too. I'm usually a really cheery, happy person, and it sucks when I'm all sad and stuff. I have trouble asking for help, I just feel like it shouldn't be anyone's responsibility except mine, although I am learning to accept help more readily - soon, I may require more.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby the_stabbage » Sun May 03, 2009 11:37 pm UTC

I don't have a disability myself, but I have recently become well acquainted with someone who has cerebral palsy. They have trouble with their left side in general: limping and occasionally dropping things. I'm a little embarrassed to say I had no idea about disabilities in general, and I thought CP meant that you were confined to a wheelchair. Needless to say it's an mind-opening experience.

I'm just generally physically weak, and I'm left-eye dominant and right handed (operation on right eye when I was 2), which only hinders me in archery or shooting. Nevertheless I hope this doesn't impair me from joining in this discussion, as I'd like to expand my awareness of the experience of disabled people.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Amarantha » Sat Apr 03, 2010 11:30 am UTC

Australian disability activists have started a campaign to get better Government assistance for people living with disabilities and those who care for them. The idea is that, with an election coming up, people will pledge to only vote for a party that promises disability support.

Here's hoping they get some results. Disability is a pretty invisible issue around here.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Auwolf » Fri Jun 25, 2010 3:35 pm UTC

As someone with Cerebral Palsy, I find some things very frustrating (I'm in pretty good condition for someone with CP, weaker left side ect.) I just get fatigued and all and can't do certain physical tasks, and I think I'm slow at processing information and such. (Like in a lecture, not conversation wise)

Well I finally decided to get some help with my courses, They originally asked me if I wanted a tutor and some extra help. I said no, since I assumed that I'd be capable of doing the courses, them being IT and al. I wanted to prove myself though, that I didn't need teacher's assistants or aide's like in high school. So I could be independent with my education and all, to not have to rely on anyone as much.

Which would have made me feel more masculine. I appreciate the help that others give me, but it doesn't make me feel masculine (or like a man so to speak) which I feel wouldn't be very appealing to women.

As it turns out, I'm now in danger of failing, even when I actually did try which really gets to me, because if I actually accepted the help, then I probably wouldn't be stressing the fuck out.
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More than anything I'd like to meet a girl and just watch movies and cuddle. I know I have to have confidence in myself or at least act like it, but my thinking is that why would to date a dude who can't physically protect her? Basically I have no real self esteem regarding my physical abilities.

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Re: [SAFESPACE] Support thread for people with disabilities

Postby Rinsaikeru » Fri Jun 25, 2010 3:47 pm UTC

I know that physical protection is not something I am looking for in love interests. I know this can't be said of every woman out there, but it does mean that it's not the only thing you can offer.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Wednesday » Fri Jun 25, 2010 4:12 pm UTC

I recently learned that my dad has Aspergers. While what I know about the classification does explain some behavioral traits that run on my dads side of the family and are extremely prominent in him, I'd really appreciate any supplemental advice regarding Aspergers and how to better interact with people who display those traits. "Dealing" with my dad, as a teenage girl, is difficult in and of itself, but I think it's exacerbated by the fact that we operate differently on a psychological level. I don't *really* know much about Aspergers....so anyone who can tell me anything from first or second hand experience would be *so badass* and really helpful.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Chai Kovsky » Tue Jun 29, 2010 1:59 pm UTC

I don't want to dogpile on Krikkit, because I see where you're coming from, but there's very little I can do to make myself less disabled, so it's hardly all about how disabled I let myself be. Sure, if I stopped taking pain medication I would be way more disabled, but realistically, that isn't going to happen. In the meantime, it's ableism and societal impediments that disable me way more. If and when I get a wheelchair, the lack of curb cuts and ramps are disabling, even though being able to move with less fatigue and pain by having wheels should, in fact, be abling. Societal attitudes and memes about disabled people disable people: "people on disability allowance are cheating the system," politicians and the media say over and over again, as if it were easy to get and keep disability payments rather than a herculean task that, even if I needed them, I would have nowhere near enough resources to obtain. That's right, it's so easy to cheat the system that people end up in nursing homes, homeless, or even dead rather than get the benefits they're eligible for because governments everywhere are convinced that we're not really that disabled, we just don't want to work. Companies don't know the law and will kick out people with their service animals rather than conduct transactions they're entitled to, because they are ableist and couldn't be arsed.

All of those things disable people way more than their internal attitudes or willingness to try yet another treatment. If I hear one more time that more exercise will help me, or some herbal remedy, or even another pain medication, I will scream. I know my body and I want it to be better. The "it's hard to get to the gym" that makes many people reluctant to exercise would apply way less to me if it helped my condition, because not wanting to be in pain and exhausted all the time is more than enough motivation to work out. If it worked, I'd do it. But guess what? When I did that, it made me worse! When I took those meds, I got sick! And yes, massage therapy would be absolutely bloomin' wonderful and help me loads, and when I fall into a fat pile of money from the lottery, I'll get right on that shit!

Yeah, that went way beyond Krikkit's comment (and I'm really not trying to harsh on you, Krikkit, honestly I'm not), but the amount of ignorance people have is astonishing. And it's not just for able-bodied people either; someone with mental illness might say some of those things about someone with a physical disability (or vice-versa). Everyone has internalized ablelism of some kind or another. And it just makes me really, really angry.

So yeah. Yay for the new safespace. I only wish we didn't need it.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby setzer777 » Wed May 25, 2011 5:40 pm UTC

Necro for something that I hope is appropriate for here:

I've just started a relationship with someone who has cerebral palsy (mainly just affects legs, she's in a wheelchair). Things have been wonderful so far, but there are a few things I'm figuring out:

1. Seems like a lot of friends I tell have to say something like "you're such a good man for being able to overlook that, I couldn't date someone in that situation." I'm sure they mean well, but it's a bit infuriating when people act like I'm a saint providing charity or something. Trying to figure put the most appropriate response to those comments.

2. We've had sex once, which took some figuring out, but was pretty amazing. I know a lot of stuff we'll just need to figure out with each other, but are there any good resources for sex with disability? Most seem very general since there's such a wide range of potential challenges.

3. She has made some comments about how I don't deserve the difficulties that dating her would require, and how I don't yet realize how challenging it will be. I'm still getting to know her, so I've basically just told her that I think she's worth getting to know better, and that she should trust me to learn about those challenges and decide for myself if it's worth it (and that from what I've seen so far I'm not scared away at all).

Again, hope this is appropriate for this thread, and any advice or feedback is welcome!
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Virtual_Aardvark » Wed May 25, 2011 6:28 pm UTC

1. "Overcoming what?" My mom's been in a wheelchair for a very long time and whenever someone brings up how brave I must be I feign ignorance until they give up or figure out my point. This may be a bit acidic for you but it's the only thing short of an entire lecture on etiquette in relation to PWD that's gotten the point through.

2. Sex will take some time. When you're still getting used to each other err on the side of caution just as you would with an able bodied partner. As you learn her body and her reactions you'll have more room to "let go" as it were. Obviously listen to everything she says and follow her instructions should she give them.

3. It's common for people with disabilities or illnesses to feel as if they don't deserve or are a burden to their partners. The best way to prove her wrong is to stay with her and treat any quirks or minor obstacles related to her CP as if they're no big deal. This shouldn't get in the way of being concerned should serious health issues arise. It sounds like you're already doing pretty well here.

Both of you are likely to catch a lot of shit in the future and it may take time to learn to brush it off. But it's all worth it if you two are a good match.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby felltir » Thu May 26, 2011 9:59 am UTC

Postin' for ego search.

Mental stuff, Dyspraxia, Type 3 Ehlers–Danlos syndrome. Fun times.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby a_fuzzyduck » Thu May 26, 2011 4:31 pm UTC

hullo. Asperger's/HFA (46 on the Ali G's cuz test), and ongoing depression here.

Where the FUCK is our support after childhood gnaaaaaaaaaaaaarrrrggggghhhh?
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Re: [SAFESPACE] Support thread for people with disabilities

Postby PAstrychef » Thu May 26, 2011 9:28 pm UTC

Autistic spectrum kids are cute in the eyes of the media. Autistic adults are creepy. Cute things get funding (hello, baby seals!) creepy things should be ignored.
Also, autism is presented as something that affects kids-the idea that those kids actually grow up and may still need help is still quite novel to most folks. After all, Temple Grandin proves that you can get along fine, right?

Setzer-you can try telling your friends that you're feeling lucky to be going out with such a neat person and that her CP has had little impact on your sex life, which is no doubt what they're most concerned about. If both of you are enjoying the sex, you're doing it right. Check out www.thesite.org for more info.
When she says she doesn't deserve you, just keep telling her she's wrong. Admit when the difficulties of dealing with CP are difficult. Pretending that everything is hunky-dory gets stale fast, and feels like you're going for sainthood.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Menacing Spike » Thu May 26, 2011 10:14 pm UTC

I have depression, apathy, suicidal impulses, terrible memory, no concentration to speak of, used to hear voices. Extremely low social intelligence and empathy. The antidepressants, they do nothing.

All the while my body is ready: strong, tall, handsome, resilient, rather healthy despite the abuse it takes. A lot of good that does...
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Re: [SAFESPACE] Support thread for people with disabilities

Postby felltir » Fri May 27, 2011 12:12 am UTC

Menacing: I have the body problem... noone believes me that I might have problems, because I'm 6'2 and nothing that could ever be described as small (mostly due to the fact that increased muscle mass REALLY helps my joints work).
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Re: [SAFESPACE] Support thread for people with disabilities

Postby setzer777 » Fri May 27, 2011 4:11 am UTC

Thanks for the advice! I am really excited to be with her. I do kinda wish I had known before choosing this apartment - it's a beautiful complex, but a nightmare accessibility-wise (built on a hill, with tons of oddly spaced steps up and down).
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Amarantha » Sat Jun 04, 2011 11:53 am UTC

So I'm an email admin by trade. I spend my time doing semi-automated account provisioning tasks, preparing usage reports, troubleshooting client issues etc. Most of my client contact is by email rather than by phone or face-to-face.

At least, that was my job until I was seconded to a temporary but long-term project position which requires organising/attending/documenting meetings, long discussions with the rest of the team, liaising with consultants and company reps, participating in conference calls and so on. In other words, lots of social, verbal, people-based work. I knew this when I accepted the challenge, and I think I'm doing well enough. It's stressful, but not in a bad way. It's challenging and satisfying.

The interesting part is that it seems to have made me "more autistic" in a way. Because I spend all week concentrating on human interaction, and thinking in more creative ways than my old job required, I don't seem to have enough mental energy left to deal with the general public and the daily minutiae of life. We went house hunting today, which I'm usually way organised at, but I was all flustered and confused. I can usually handle a certain dose of crowds, but today human proximity was all too much.

Luckily for me, my husband recognises this sometimes before I do, and gets between me and the crowd, or suggests heading down a side street for a bit. But I am going to have to create some calming rituals to keep the stress levels low so I can cope in general with job and world. I did some yoga today, which was nice. I think I need to crack out my puzzles again; I don't do them often enough since we started driving in instead of taking public transport. Now that I've finished my Masters degree I should have the time to take care of myself and my brain. *considers a brain-calming musical playlist*
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Beardhammer » Sun Jun 05, 2011 9:27 am UTC

Wednesday wrote:I recently learned that my dad has Aspergers. While what I know about the classification does explain some behavioral traits that run on my dads side of the family and are extremely prominent in him, I'd really appreciate any supplemental advice regarding Aspergers and how to better interact with people who display those traits. "Dealing" with my dad, as a teenage girl, is difficult in and of itself, but I think it's exacerbated by the fact that we operate differently on a psychological level. I don't *really* know much about Aspergers....so anyone who can tell me anything from first or second hand experience would be *so badass* and really helpful.


Wouldn't mind knowing more about the condition myself. I realize this is something of a necro-reply.

My understanding of it is just that it's something like a mild form of autism that usually results in the person being very antisocial, or basically being really, really bad at talking/interacting with people "normally." It also seems to be a condition that gets self-diagnosed an awful lot, like ADHD. It initially made me think it was a load of crap (I initially thought that about ADHD as well, though I've since been proven incorrect there), but it does seem to be completely legitimate... just overdiagnosed, maybe (like I said, it seems a bunch of bloggers like to construe "not good at talking to people" as "I have Aspberger's!")
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Amarantha » Sun Jun 05, 2011 10:41 am UTC

I don't know how I missed Wednesday's post, but I will reply to both Wednesday and Beardhammer once I am no longer drnuk. Sometime in the next few days as I no longer have time to visit daily.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Sungura » Sun Jun 05, 2011 8:13 pm UTC

All I'm learning about aspergers is from friends who have it...it is a wide and varied spectrum...to me the easiest way for me to deal with people who have it is to try hard to think in what I call "spock-mode" (a term I use to describe a way I used to deal with things from my own father and abuse, to avoid feeling anything at all, basically try to approach everything with pure logic and leave emotion at the door) because usually the most annoying (to me) part is they really don't watch how they say things. I like being told things direct, yes, but you can be nice and direct or rude and direct and often times things they say come across like they are horrible jerks (and I am told being direct is always rude...I beg to differ but ah well). Of course, this is only my own experience with a few, and ymmv.

Oddly enough, for my whole life I've never really innately understood social interaction, I enjoy being around people and having friends and hanging out, but behaviors can confuse me, I don't like meeting new people, I don't like crowds (3 or more) of new people...etc. Noise bothers me a lot too. Various other things. I always just kinda figured out how to handle things and it was recently suggested when I was talking to a friend with aspergers he suggested I might have it as he saw things about me similar to him...I investigated out of curiosity and I do test positive for aspergers myself actually. I don't feel it really changes things about me, I just have a name to put with certain aspects of myself now. Oddly enough, none of my friends I have mentioned this to believe me - they say I am easy going, make friends well, very friendly, no one would guess I have any problems. The first time ever somoene asked me about it was just last weekend, friend of mine I cave with asked if I have aspergers mostly because of not understanding jokes and some social awkwardness he'd noticed, and that's the first time anyone ever wondered that of me enough to ask at least. Of course, he sees me in large new groups, that are noisy, full of people I don't know, and also then underground in smaller groups you can get to know people pretty durn fast so I think he sees sides of me that other friends might not so easily see. But in general, no one suspects or believes I have any traits from it at all.

I got good at an early age covering things up though because I *do* like having friends so it was just something I had to deal with. Apparently, I am learning in undiagnosed cases such ability to adapt and cover up is common, because that's how it's dealt with, I just figured enough of it out on my own without being taught (and now, I am learning even more techniques for dealing with things and learning more about social interaction because I am learning to understand how/why my brain works how it does, rather than just figuring things as I go along).

So yeah....anyway this is just all my observations on it...I am one person and I only have a few friends with it so please don't take it as "gospel" or such.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby mjm » Sun Jun 05, 2011 10:03 pm UTC

Hmm. All this has prompted me to find the diagnostic criteria for Asperger's, and I would seem to test positive on all three versions I found. I have strongly suspected this before, but I still hesitate to self-diagnose. It's not as if it would make a difference at this point.

Anyway, I wanted to mention a book I read, Neurodiversity, by Thomas Armstrong. The premise is simply that the milder forms of many psychological "disorders" are different, not necessarily bad. He then gives examples of how some traits of Asperger's, obsessive compulsive disorder, depression, and others have in fact been valued in certain cultures and contexts. Clearly, there is a point beyond which too much of any of those is harmful, but I would tend to agree. Every one is different, and from my perspective, not wanting gobs of friends doesn't make me a broken person. It didn't have a great deal of new information for anyone who has looked into such conditions, but I thought it worth a mention.

Also, regarding coping, if you do it for years, you may forget how much you actually use it. For example, whenever I am talking to someone face to face (as opposed to me hunched over some project or something), I "make up" facial expressions. I've done this for a long time. To me, deciding how to arrange my face is just as normal a part of talking to people as deciding what to say. It's only when I am reading about how Asperger's people have limited facial expression that it occurs to me that for some people, it's not a matter of thought at all.

An amusing (in hindsight) consequence of this is that when I am primarily listening and must think deeply about what is being said, I end up dropping facial expressions. I have been accused on multiple occasions of looking like I want to kill someone, simply because I end up looking at the speaker intently with no change of expression for a long period.

I've considered making a shirt that says, "I'm not just shy, I'm antisocial," or even "I'm not antisocial, I'm sociopathic." Luckily almost no one talks to me anyway.
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Re: [SAFESPACE] Support powwow for people with disabilities

Postby Plasmic-Turtle » Mon Jun 06, 2011 2:19 am UTC

Wednesday wrote:I don't *really* know much about Aspergers....so anyone who can tell me anything from first or second hand experience would be *so badass* and really helpful.

Late to the game, but I was doing a search of the fora on Aspergers out of curiosity and procrastination and only just saw your post. Anything I can say is purely anecdotal, as everyone is different, and how your Dad is affected by and deals with Aspergers is probably entirely different to my own family.

Basically, my older brother is diagnosed Aspergers. My Dad is not diagnosed and is certainly far more 'highly functioning' than my brother - i.e. any Aspie qualities he has have not had such a large impact on his life - but he does seem to have quite a few Aspergers-type qualities, and, given the idea that there may be some genetic component to it that is passed more easily down the male line (sorry for lack of citation!) my Mum and I think there's a possibility he may have a very mild form or the like.

Spoilered for incredible length!
Spoiler:
From what I've been told, some of the main features of Aspergers are:
- difficulty picking up on social things such as facial expressions and idiomatic phrases
My Dad struggles with recognising whether someone is interested in his conversation, and starting/finishing conversations can be difficult. He's not as proactive as my Mum with including himself in our lives or keeping touch, and a typical phone conversation may be along the lines of:
"Hi."
"Hi".
"So what've you been up to lately?"
"Just sitting in my chair, really".
...which doesn't really get things started. What I've found helps it to find ANYTHING I've been doing which is part of his 'interest' list, and start discussing it. He's well travelled, and interested in languages, books, religion... all things which really interest me, and I learn a lot when we get going on a good talk, but the onus falls on me to get it started, and it's up to me to keep in touch and include him with what's going on in my life. It's also a mission to get conversations finished - he won't pick up on my "I'm bored as I've heard this extended monologue pretending to be a conversation in its entirety on a previous occasion" body language, if he's even got his eyes open, and somehow entirely disregards any words I do manage to get in saying things to that effect. In fact there has been more than one occasion where I have given up and simply left the room to go to the loo or get some items etc. and come back in 2-5 mins later to find him still talking, having not noticed I'd left. I've not yet found a solution to this one, other than prying out bits of things he says that are tangential to the main monologue, and using them to steer things in a direction which interests me and I haven't heard before. Or just leaving the room, if I'm meant to be somewhere, as rude and cruel as it feels. His spiels are incredibly interesting the first time, but not so much the 3rd or 4th.
My brother will struggle with phrases like "pull your socks up" the first time he hears them. He'll either interpret it literally and get confused, or (now he's an adult) ask what we mean. He also nods more slowly and holds himself and his expressions differently to others, which sometimes leads them to think he's more severely intellectually disabled than he is: e.g. while we were having an afternoon tea at Mum's friend's house her husband offered to take my brother for a tractor ride - he was 25. My brother was all good with going on a tractor ride and didn't pick up on the fact that the husband thought he was intellectually handicapped though, due to his difficulty with social interactions/implications. I mean heck, I would've preferred a tractor ride to sitting about making polite conversation too!
- having particular interests: e.g. being very into trains or something
I haven't seen this so much in my family, not to the extent that it is played on when people with Aspergers are portrayed in films and on television and the like. My father IS an incredibly intelligent man, and he has have few real-life friends and doesn't go out often at all, but he doesn't have one particular obsession, just several strong interests: collecting incunabula (books from the earliest days of printing), Shakespeare authorship, religion/spirituality, and languages. My brother's main interest has been in computers and programming, but not to a super-genius obsessive level, and he's also had other interests such as dogs and carnivorous plants. And a bit of a thing for balloons. It makes it more difficult when their set of interests barely overlaps with your own (as has been the case in the past with my brother), and we have to work a bit harder for the common-ground to have good conversations and stay close.
- a dislike of change, enjoying routines
My father lived at home with his parents until the age of 40, although to be fair he had spent some time in the army at a younger age before moving back in. My brother (now 28) still lives at home with our parents. Dad rarely travels, and has only been to see me in my university city once in 6 1/2 years - for my graduation. He doesn't like anyone moving his books and papers and things, although he's more than happy for me to look at 400 yr old books if he gets them out for me and I've got clean hands. My brother will take the dog for a walk through exactly the same route in the park every single day, and dislikes this changing although he'll try to be accommodating of me wanting a bit of change if I'm home and go with them. He likes to notice the changes that occur through time on that same route rather than take a different path.

In addition, my brother has always had difficulty wih his hand-writing, which still looks quite child-like. He needed extra help with English and Math throughout school.
He is also very visual and has a thing about germs: he pictures a big gooey brain in his head whenever he hears the word brain, which grosses him out, and made things difficult when my main field of study was biology and I'd come home from university used to being able to say words like brain and heart whenever I wanted. Every time I go home I sneeze like crazy due to the accumulated dust around Dad's piles of books, and my brother screams at me cause he has issues with germs (& thus sneezing), and I scream back at everyone cause the sneezing is making me feel like shit, and then Mum gets all upset because her family is falling into pieces. Yay for Christmas. One year Dad threatened to call the police on me because I was insisting on vacuuming the house (including behind his precious boxes), and tried to recycle an 'important' piece of paper of his. It was a piece of paper with the time for a dentist's appointment 6 months previous. My brother tries very hard not to scream when I sneeze these days (he shuts himself in his room instead) and I try to dose up on antihistamines and get out of the house as much as possible - there's no changing Dad, he's pretty set in his ways.
Both my father and brother struggle to make 'real-life' (non-internet) friendships, and struggle with depression from time to time. Although this may be separate depression-genetics, my sis and I have had issues with it too. I think not 'fitting in' does have an effect on my brother, but at the same time he doesn't want to fit in - he'll wear trackpants that don't look like they should ever leave the house and dry his hands on this T-shirt after washing them, no matter how much we suggest otherwise. I think drying his hands may be partly a germs thing - he knows where his T-shirt's been, and knows he's washed his own hands thoroughly.

I don't know if any of this has been helpful Wednesday, or whether it's at all similar to your experience? If you tell me some of your specific difficulties, then I might be better able to explain how I've dealt with any that I'm familiar with.

I worry about my brother quite a bit, in terms of his depression, whether or not he'll feed himself healthily and how well he'll cope once our parents pass away, and just how sweet-natured he is. A drunk man in a park at night offered him a hand-job, and rather than being disturbed by this he just said 'no thanks' and then had a long chat with the guy. I think it's great to be like that, but he IS considering travelling overseas now, despite having done barely any travel ever before. I'm worried about him being too trusting with people who'll try to steal his luggage/money, and about customs officials suspecting him of being on drugs or the like just because of his odd mannerisms. He's also had shit luck with his 3 closest childhood friendships, and doesn't put himself in many situations where he might make more friends. If anyone has any advice on ways I could help him, that would be much appreciated.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby natraj » Mon Jun 06, 2011 3:27 pm UTC

Spoilered for being ranty and not on topic with the current vein of helpfulness.

Spoiler:
Yesterday my friend and I tried to go see X-Men at a Showcase movie theatre. The show was supposed to be captioned, but when it started playing, the captions weren't working. We went to talk to the manager; it was a little irritating because this is the fifth time this has happened at that chain. She was very apologetic though and sent someone in to make sure the captioning got turned on and was working properly, but by then the movie had been playing a while so we'd missed a bunch of it. She refunded our money and gave us passes to the next show and an extra pair of free movie passes for the inconvenience, and assured us that at the evening show the captioning would be turned on properly.

We went home, came back to the movies again later that day for the next show. AGAIN the captionings weren't turned on. By that point it was a little bit ridiculous. We left to talk to the manager again (a different manager, this shift, although he had been present in the afternoon he was not the one we dealt with earlier) only this time, he just got mad at US for complaining, refused to call his supervisor, insisted there was nothing they could do about anything, and threatened to CALL THE COPS on us for making a scene. (We were upset, but we were not yelling or in any way threatening or violent; we were asking for him to call his regional manager who is the person we had to deal with last time we encountered this problem at their chain, and he did not want to call her.)

I am kind of really pissed off about this. It was so disrespectful, and to threaten US with police action because HE was not compliant with keeping his theatre accessible for people with disabilities was the most blatantly improper way to handle the situation.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Aaeriele » Mon Jun 06, 2011 3:36 pm UTC

natraj wrote:Spoilered for being ranty and not on topic with the current vein of helpfulness.

Spoiler:
Yesterday my friend and I tried to go see X-Men at a Showcase movie theatre. The show was supposed to be captioned, but when it started playing, the captions weren't working. We went to talk to the manager; it was a little irritating because this is the fifth time this has happened at that chain. She was very apologetic though and sent someone in to make sure the captioning got turned on and was working properly, but by then the movie had been playing a while so we'd missed a bunch of it. She refunded our money and gave us passes to the next show and an extra pair of free movie passes for the inconvenience, and assured us that at the evening show the captioning would be turned on properly.

We went home, came back to the movies again later that day for the next show. AGAIN the captionings weren't turned on. By that point it was a little bit ridiculous. We left to talk to the manager again (a different manager, this shift, although he had been present in the afternoon he was not the one we dealt with earlier) only this time, he just got mad at US for complaining, refused to call his supervisor, insisted there was nothing they could do about anything, and threatened to CALL THE COPS on us for making a scene. (We were upset, but we were not yelling or in any way threatening or violent; we were asking for him to call his regional manager who is the person we had to deal with last time we encountered this problem at their chain, and he did not want to call her.)

I am kind of really pissed off about this. It was so disrespectful, and to threaten US with police action because HE was not compliant with keeping his theatre accessible for people with disabilities was the most blatantly improper way to handle the situation.


*hugs* That sucks. :/
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Felstaff » Mon Jun 06, 2011 3:48 pm UTC

natraj wrote:Spoilered for being ranty and not on topic with the current vein of helpfulness.

Spoiler:
Yesterday my friend and I tried to go see X-Men at a Showcase movie theatre. The show was supposed to be captioned, but when it started playing, the captions weren't working. We went to talk to the manager; it was a little irritating because this is the fifth time this has happened at that chain. She was very apologetic though and sent someone in to make sure the captioning got turned on and was working properly, but by then the movie had been playing a while so we'd missed a bunch of it. She refunded our money and gave us passes to the next show and an extra pair of free movie passes for the inconvenience, and assured us that at the evening show the captioning would be turned on properly.

We went home, came back to the movies again later that day for the next show. AGAIN the captionings weren't turned on. By that point it was a little bit ridiculous. We left to talk to the manager again (a different manager, this shift, although he had been present in the afternoon he was not the one we dealt with earlier) only this time, he just got mad at US for complaining, refused to call his supervisor, insisted there was nothing they could do about anything, and threatened to CALL THE COPS on us for making a scene. (We were upset, but we were not yelling or in any way threatening or violent; we were asking for him to call his regional manager who is the person we had to deal with last time we encountered this problem at their chain, and he did not want to call her.)

I am kind of really pissed off about this. It was so disrespectful, and to threaten US with police action because HE was not compliant with keeping his theatre accessible for people with disabilities was the most blatantly improper way to handle the situation.


Fury levels: rising.

I have a gift of writing particularly scathing, threatening letters, and would be glad to lend my services. I've seen a few episodes of Judge Judy and can make vague-sounding legal jargon sound like the threat of litigationatising (after all, they have advertised a service and not lived up to it; false advertising is a serious crime!) Only last week I got a written apology from the bus company plus minor compensation.

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Re: [SAFESPACE] Support thread for people with disabilities

Postby pseudoidiot » Mon Jun 06, 2011 3:57 pm UTC

Or the most awesome, depending on which side of you they're on.

Throw in another +1 for that's utter bullshit. Especially since this appears to be a continuing problem. Has their captioning ever worked as expected?
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Sungura » Mon Jun 06, 2011 4:59 pm UTC

Dang, just reading that makes me pissed. I think we should do a letter writing campaign against them :evil:
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Ptolom » Mon Jun 06, 2011 8:51 pm UTC

That's pretty crappy. Some people will say anything to intimidate anyone who gets in their way.
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