[SAFESPACE] Support thread for people with disabilities

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Re: [SAFESPACE] Support thread for people with disabilities

Postby mochafairy » Fri Nov 18, 2011 6:30 pm UTC

Thank you for the e-hugs. I need them.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Aaeriele » Sat Nov 19, 2011 10:13 pm UTC

*hugs mochafairy*

I hate it when that happens. :/
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Re: [SAFESPACE] Support thread for people with disabilities

Postby a_fuzzyduck » Tue Nov 22, 2011 8:37 pm UTC

blehhh... so employer I applied to the other week is on the Two Ticks scheme - basically if you have a disability you get a guaranteed interview, with very few exceptions.

Today I get a rejection letter grrr...
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Saurus33 » Thu Nov 24, 2011 11:42 am UTC

So, I have schizophrenia. And OCD, and diabetes. I am very open about my disabilities, as I feel that in order to change some stigma about disabilities (esp. the schizophrenia) I need to show that I both have said disabilities and that I am functional.

How open are people about their disabilities?
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Aiea » Sat Nov 26, 2011 7:50 pm UTC

I have to be open about mine, hard to hide the shaking. Though I am hoping to actually pick up that prescription I got from the dr the other day, and then hoping that'll work to lessen the shaking some.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby mochafairy » Tue Nov 29, 2011 5:33 am UTC

I tell people who need to know. Family, friends, coworkers (once I have the job)...and even then, it's a "what you need to know" amount of information. Some of my friends are trained in glucagon, and my close family is as well. Everyone else gets the "If I look like crap ask if I need juice" explanation, and maybe a bit more, depending on my mood and the person.

When I was in middle school, everyone knew. I had a lot of food and body policing. People kept telling me what I could and couldn't eat. People kept telling me that it was my fault. People kept telling me about the newest cure that they'd heard about.

In high school, people found out. They knew my freshman year because of my older brother. They knew my sophomore and junior years (I switched schools after 9th) because word travels and I was lumped into the same category as another kid who happened to be T1 diabetic, like myself. At lunch, people would slap food out of my hands; they'd throw my lunch on the floor; they'd do just about anything to make me only eat a piece of lettuce.

I had teachers tell me that they felt like they shouldn't have to give me the grades I had because I was disabled and therefore missed a lot of class. I tried to logic and tell them that if I was missing twice the class and still kicking ass, that meant that I was doing better than my peers, not worse. They didn't like my reasoning. I had teachers tell me that they didn't want me to participate in extracurricular activities because I would have to go off campus and I would probably die on them or something. I was discouraged from existing with "normal" people in every aspect. I ate alone. I studied alone, unless forced. I was shoved into a corner and forced to be quiet. If I made a peep, I would get a rant about how I was lucky to get to go to school or I would have my food thrown on the floor...again. If I brought it up with the school administration, they would just sit and smile and then send me back to class.

So, when it came time for college, I refused to register with the disability office. I refuse to tell profs and TAs unless I feel like I need to. I refuse to tell my peers unless I want to. Knowing my history, my life, is a privilege, not a right. Honestly, I'm terrified of being treated like less than crap again. Some of my friends treat me way different now that they know. Some treat me the same. I wish everyone would treat me the same, but I know that's never going to happen in my lifetime.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Kewangji » Tue Feb 14, 2012 1:22 am UTC

Bumping this thread because I'm feeling disabled for the first time. Uhm, hi.

I have diabetes, gluten intolerance, some form of eating disorder, and apparently also terrible headache. The headache is a new thing. I think the thing gets triggered by quickly rising pressure when I've eaten badly. Or have a cold. Or something. It happened once before when I flew to Copenhagen from London, sometime in October. On the return trip, I was fine. On my trip to England in January, I was fine. On my way to Copenhagen from London today I experienced the worst pain I've ever felt though, so that sucks. It's ebbed away and lingers unignorably somewhere behind my eye now.

I ate breakfast and lunch today, and I've been generally pretty good with food-eatings lately. Apparently the curry I ate yesterday was bad for me, though, because I was ill this morning. I was sort of counting on dinner today. I ate lunch (chicken salad) at … 4pm. Using Danish time for everything because that is easier. I arrived in Copenhagen at 10pm, and the friend I'm staying with informed me that there will be no dinner. And that she has no food at her place. Literally no food. I didn't think much of it and thus failed to go and buy shitty food somewhere nearby the airport or Hovedbanegården.

We went to sleep at around midnight, and the lingering headache kept me awake. I went up to do Internet stuff after an hour of not sleeping and I've realized that my blood sugar might drop below recoverable levels if I go to sleep now. And there is no food. So all I can do is wait for my friend to wake up in ~5 hours and have her tell me how and when the trains into central Copenhagen work. (Did I mention this is the middle of nowhere?)

Uhm. I'm not wrong to feel like my friend really should have food, am I? She knows I'm diabetic and gluten-intolerant. Don't know if she remembers the eating stuff. I don't know how I feel now, but it's not good.

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Re: [SAFESPACE] Support thread for people with disabilities

Postby Virtual_Aardvark » Tue Feb 14, 2012 3:20 am UTC

That really sucks man.

A lot of fuckups and bad situations have taught me to explain my dietary rules to people I'm staying with before I get there. I don't have any restrictions anymore but am not only recovering form some fairly severe ED but have to eat regularly thanks to my meds. It was even worse when I was vegetarian or couldn't eat certain things due to different meds. Explaining that I won't always be able to eat stuff like bacon or cake and can they please have some fruit and veg on hand so I don't go hungry is the hardest part usually.

Not many people think about food the way those of us with eating related illnesses and restrictions do. While your friend may be sympathetic that doesn't mean she "gets it" per se. She should have food but that doesn't mean that it carries the same weight for her as for you. She may not connect your diabetes to her pantry. A friend of mine is always surprised that I cook an extra vegetarian entree for her at parties. Most people simply don't think to despite the fact that that means she often goes hungry. That's for something as familiar as vegetarianism. When confronted with gluten intolerance, religious diets, allergies or illness most people have no clue.

It sucks but the burden will always be on you to remind and teach people. Sometimes it's better for your health to assume the worst of your friends in this regard.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Kewangji » Tue Feb 14, 2012 3:46 am UTC

*nods*

You're full of wisdom. I'm just … used to people getting it. Hanging around vegetarians and disabled people would do that, I guess. There was no problem the last time I visited, but apparently that was because of her roommate, not her. Her then-roommate is now somewhere way else.

The feeling of hunger is so similar to the feeling of low blood sugar. It is unsettling. I am also noticing how very much irritable I'm getting.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby PictureSarah » Tue Feb 14, 2012 3:52 am UTC

I don't feel like that's unreasonable at all, actually. I keep some protein bars with me at all times, partly because I have a diabetic coworker, and partly because it's actually pretty common that someone in my life (coworker or friend) will just have not had time to eat, and will be grumpy and low-bloodsugarish. I don't always have gluten-free things, I suppose, but if I knew someone who was diabetic and GF was coming to stay with me, I would certainly have stocked up and probably even made some kind of rice-based casserole!
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Virtual_Aardvark » Tue Feb 14, 2012 4:12 am UTC

Just to be clear:

It's absolutely reasonable to expect your friends to make accommodations for you and there is absolutely nothing wrong with expecting them to. I hope I didn't sound like I was saying anything less.

I always freak out when I wander outside my safe space and suddenly people don't get that they may be doing harm. It's so easy to get used to people understanding your disabilities that everything is that much worse when they suddenly don't.

Carrying a power bar or it's gluten free equivalent with you is excellent advice.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby PAstrychef » Tue Feb 14, 2012 4:27 am UTC

Heck, it's reasonable to expect people to have food in their house even if there is no disability involved. I would not feel guilty about waking up said friend and getting them to help control a potential health crisis NOW. Taxis, food delivery, 24 hour gas stations with snacks....being a pain is better than being seriously unwell.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby poxic » Tue Feb 14, 2012 5:45 am UTC

I wrote a big, useless post about food allergies and eating at other people's places. It was big and useless.

The tl;dr version: if my needs are complex, I will provide for myself. If they are simple, I will ask ahead of time and hope for the best, but still make sure I am covered by bringing an emergency snack or few.

Here's the entire post I conjured up, for what it's worth.
Spoiler:
I'm not sure I can speak to what people should or should not do for others, food-wise. If I invite a friend over who has allergies or other food restrictions that I know about (and I try to always ask), I will ensure that this person is safely fed. I really can't expect the same from others, at least not since the whole food issue went atomic for me. Most people don't experience food as hostile territory. They don't get it, because they've never been there.

I used to tell people what I was allergic to, so they could have some things available that weren't that. Most people made at least a noble effort to accommodate me. I had a few non-death-dealing allergies, and I'm vegetarian for medical reasons. Not that big a deal.

Then my allergies continued to accumulate. It's basically oral allergy syndrome plus some other things. The list of allergenic foods is now -- last I checked -- longer and more complicated than the list of safe foods. Nothing I know of will hurt me much (I think) if I stop as soon as I figure out there's a problem, which is something I thank the universe for pretty much daily.

Lately, I don't bother telling new people ahead of time. I bring my own food if I'm going to be somewhere unknown for more than a couple of hours (also have hypoglycemia :evil: ). Maybe it's just an energy bar I can tolerate, or I'll also bring some homous and pita crackers I can share with others so I can feel a bit gracious about the whole thing. If I expect the visit to be longer than four or five hours, I will bring a portable meal or two for myself as well. If I'm going to be spending several days at a friend's or relative's house, I will ask to go to the grocery store so I can get my own food, which I will prepare and cook when my hosts are not using their kitchen.

When everyone else is at table eating their chicken and carrots and celery and lemon and apples and peppers (black, bell, hot, whatever), I will eat my broccoli and rice and chickpeas and clink their wineglasses with my beer mug. I will put myself right in there, because really, the food isn't what I'm there for. It's the people I want to be with. I couldn't give less of a shit about chicken. :wink:
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Kewangji » Tue Feb 14, 2012 10:45 am UTC

PictureSarah: carrying around mini-foods is definitely something I'm going to start doing. *nods*

V_A: You did not seem like you were suggesting I'm being unreasonable. More like … "here's how to survive among unaccomodating people."

PAstrychef: I eventually did wake her up. Turns out "there is literally no food" meant that there is some food. I made scrambled eggs and then slept. I couldn't go into the kitchen without my friend, because of locks (it's a semi-communal place) so I couldn't have checked that myself.

poxic: that is not useless. Thank you for sharing. :)
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Re: [SAFESPACE] Support thread for people with disabilities

Postby mochafairy » Wed Feb 15, 2012 2:37 am UTC

Kewangji,
glad you got some food in you. Hopefully you can pick up glucose tabs or juice boxes after some sleep...and some other food too. If you need any diabetes supplies, there's a great international network and I think there are some people closer to you that might be able to help (US to Denmark...yeah...). Sorry for the ramble...I just hate it when I go anywhere and don't have my glucose tabs with me. Not sure if other diabetics feel the same way about their bg saver substance.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Kewangji » Wed Feb 15, 2012 2:31 pm UTC

I sort of fell out of the habit of having glucose tablets with me, because I tend not to get get low enough blood sugar to worry about that.

I have all the medical things I need. :)

My friend has sadly been added to the list of people who Definitely Don't Get It, after thrice complaining yesterday that I'd woken her up. The last of the times she asked me in the most passive aggressive voice she could muster, if I was going to wake her up at five thirty again. Obviously feeling like I should apologize [for wanting to sleep without worrying about dying]. Welp.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby ChimeraMica » Mon Feb 27, 2012 3:29 am UTC

I've had social anxiety for a long time, but I was only recently diagnosed. I've also come from a broken family and haven't had a very happy childhood. I actually went through a period of very intense narcissism that helped me survive for some years, but when I fell from that I had awful attitudes, felt horrible about myself, and lost a lot of confidence. As a result I just don't understand how to deal with people. I can sometimes be a little inappropriate without realizing it, and when I get self conscious then I talk a lot more than I should and say stupid things. I think this is largely influenced by my being trans. I live in a constantly combative and cynical mode and can't tell when people are joking, and can't tell when other people can't tell that I'm joking. I feel that I can't really adequately explain myself without going into my history, but I'd rather not do that unless I know someone's interested.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Kewangji » Thu Mar 01, 2012 6:02 am UTC

I'm interested and listening. :)
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Wyvern » Thu Mar 01, 2012 5:23 pm UTC

I too, would be interested in hearing.


I've not been around much on the fora because of my illness. I find myself having a hard time reading everything. It's pretty overwhelming to try and read long posts. It feels pretty bad to admit that I'm having issues with reading, I don't know why.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby mochafairy » Thu Mar 01, 2012 5:52 pm UTC

I am also interested, if you are still willing to share.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby ChimeraMica » Thu Mar 01, 2012 11:52 pm UTC

Okay, it's hard for me to do this, but I can't really tell what events most influenced me, so I'll try to be relatively complete, but it may be rambly.
Spoiler:
So, from a very young age I was a social outcast. I tended to be a tad bit dramatic, and violent too. Thinking back I think it had to do a lot with attention, and trying to fight back against my lack of confidence, and with that in mind, it makes sense that I would adopt narcissism as a way of coping.

At some point in this mess I was taking care of a neighbor's horse. Just a flake of hay over the fence every afternoon. I walked past it one day planning to come back, and when I did, I noticed that the old gelding had fallen into a small pond in the back and couldn't get help. I ran to get help and ran back, holding his head above the water. I don't know how long it took, but I heard every wheezing, gurgling breath of the dying horse, my hands cold because of the water and my arms tired. Of course it's almost impossible to save a drowning horse. He died in my hands, and because he was already dead they made a noose and dragged him out by the neck. Even though I swam after this event, I still think it contributes to my fear of water today, and I still blame myself for what happened because I didn't stop when I first passed him, and even glanced in and didn't see the horse when I first went by. I know it's not my fault, but needless to say it was very traumatic, even if I did just swallow it at the time.

I've always had doubts about my gender identity and my sexuality, but when I was fifteen, I ended up dating a girl. I think I was probably too forceful with her. Even though it never happened, part of me thought if I could enjoy having sex with her, I could escape my sexuality. I never did though, and my doubt became so great that I had to break it off. I feel a lot of guilt for this not just because I was too forceful, but because I'm sure I gave the impression that I broke up with her because she wouldn't "put out." This may even be partially true, considering I never felt very romantically about her, but I think it was an emotional struggle within myself more than anything. My parents divorced when I was about fifteen. Because my dad has a less-concerned style of parenting, which let me isolate myself, and because in order to fit gender norms I emulated him(It never did feel right), I lived with my dad, and sort of left my mother behind. (I feel guilty about this sometimes, but I try to remember how ill I was then) A little before this I began realizing my sexuality a bit, but wouldn't acknowledge it. Approaching my seventeenth birthday I finally started to accept it a bit, at least my attraction to men, and came out of the closet. Unfortunately, because it had taken me such a long time and I wanted to get it out, plus the fact that at the time I was still very narcissistic, I was very cocky about it, and even thought of myself as superior because of it. A consequence was that I made mistakes. I came out as gay, even though I'm not, to the wrong people, and seemed very cocky in the process. A noteworthy point is telling my mom. She did not react well to the news, and it made our relationship all the more strained. This was the end of my narcissism. I grew to be self-loathing, and shut myself up even more than I did before hand. About a year later I gained a little bit of sanity, and even though I had no confidence at the time, I managed to realize that I wasn't a man, and actually accept it. I started to really look back on my life, and realized that for a long time I felt trapped, because I couldn't express myself right. Because of the way I function, I came out very soon after the realization to my dad, and he reacted in a very poor manner, telling me that I should "wait four years" because that's "what a doctor would tell you." Not long after this, I eventually really snapped. I had always had suicidal thoughts but there was more consideration for it then since I was at the peak of being a social outcast in elementary school. I also took up cutting, and my dad found out about that because I needed to get stitches due to a mistake I made. He was more angry than anything else, he took advantage of my age, making the doctors disclose, even though I was almost eighteen and I didn't want to share with him. About a month after that was my eighteenth birthday, and I think it was two days after that, that I walked some miles to the hospital and checked myself into the hospital. The staff there were harsh. I was locked in a safe room, which is understandable, but I was well-behaved. I had to hit an alarm to get food, because I had been there for some twelve or something hours and hadn't seen a nurse or a doctor despite the initial check, and the security guard relayed my request for food but it was never answered. Later I was moved to a mental health clinic for about two weeks. They diagnosed me with bipolar, severe depression, and social anxiety disorder. I also asserted my gender but no word was given for diagnosis and doctors didn't seem that interested. Nevertheless, I met a lot of nice and understanding people. For the first time in my life I felt brave enough to assert my gender, but I still spent about half my time curled up in the fetal position in the corner, and subverted the staff so I could harm myself. The insurance company kicked me out. My mom found out about my hospital stay, because she couldn't get a hold of me, and told my dad she was going to call in a missing person. I still didn't talk to her. About a week back at my dad's I ended up not cleaning up one of my arms, and my dad was pissed. He sent me back to the hospital, and told me I couldn't live with him any more because he "had a responsibility to the family." When I went back to the hospital I was starting to feel a bit better, and the insurance company didn't kick me out. After three weeks I was ready to leave, with the bipolar being said to be misdiagnosed, in part so my insurance company would let me stay the first time. I ended up moving in with my mother, having spoken to her only briefly during my second hospital stay. She was actually amazing. She apologized for all she did and tried her best to be supportive. She was still judgmental sometimes, and she considered me lazy, but it was better than what I had before. About by the end of the summer(the hospital visit was in May) I was seeing a personal therapist who I really liked, and was planning on moving to Oklahoma with someone I met online about a year before I started seeing her. She actually encouraged me, because apparently Reno/Tahoe has apparently no upward mobility, and no support for trans people. With the help of my therapist I was able to overcome a lot of my confidence issues and did a lot of healing. I visited my friend online for two weeks, and was in love. We had been unsure for a long time but this proved it. By the start of the new year, I was moved in with him. He payed for the ticket, got a new job, and basically rearranged his life for my sake. <3 I can't even express how grateful I am for that, and he's the most understanding person I've ever met. Unfortunately, even though we have enough money to get by, I have trouble getting a job, since my social anxiety, not at all hurt by the amount of distaste there is for trans people, prevents me from doing much. We've been looking for a place that calls itself LGBT friendly, but haven't had too much luck yet(to be honest we haven't looked too hard, still getting moved in.) Because I had always been told that I "had it easy" and that I'm lazy, I feel kind of guilty for not doing much, but I am surviving and healing, so it's a start, and I've talked to Kevin about this and he's sympathetic of my fears.


Again, sorry for the rambling. I guess to sum up I'm full of guilt and traumatized by the honestly horrifying experience of male socialization that doesn't fit with my gender, and the self-erasure and fear that goes along with it. In the end I have massive social anxiety keeping me from getting a real social life, and making it extremely difficult to get a career. So ends this episode of Mica Whining.

Edit: I know this will never be complete, but I was diagnosed with a number of mental illnesses at a young age. Even though about half of them didn't turn out to be real, it was still hard because it stippled my confidence and made me feel like less than normal.
Last edited by ChimeraMica on Sat Mar 03, 2012 4:07 am UTC, edited 2 times in total.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby mochafairy » Fri Mar 02, 2012 1:47 am UTC

You can whine here. :) *offers internet yummies and hugs, if you want them*

Thank you for sharing.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Kewangji » Fri Mar 02, 2012 11:01 pm UTC

Seconding mochafairy's post. :)

Also, *hugs* for Wyvern.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby felltir » Sat Mar 03, 2012 1:33 am UTC

Doctors say it's looking more and more likely I'm gonna end up in a wheelchair sooner rather than later.

Fuckity.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby lysithea » Sat Mar 03, 2012 7:14 am UTC

I'm autistic, depressed, have really bad anxiety problems, trans, always exhausted, physically weak, terrible motor skills (probably a smidge of dyspraxia) and lots of other fun things. So, hi, I guess. Hello!

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Re: [SAFESPACE] Support thread for people with disabilities

Postby Virtual_Aardvark » Sat Mar 03, 2012 8:05 am UTC

felltir wrote:Doctors say it's looking more and more likely I'm gonna end up in a wheelchair sooner rather than later.

Fuckity.


There's a huge distance between where you are now and fulltime wheelchair user. I don't want to presume anything about you or your situation but partial wheelchair use can preserve physical function. Hugs if you want them.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Amie » Wed Mar 07, 2012 2:40 pm UTC

*Hugs* for anyone who wants them. Hell, *cuddles* and *snuggles* too.

Spoiler:
What I have is depression and other related issues. I might not have to call these things disabilities in an ideally good society but because of my immediate surroundings, I feel immensely disabled and tired all the time. I don't have a family or a single friend who will understand. My relationship isn't great at the moment, either. Everything around me is just pulling me down and I feel like I can never really be loved or even liked a lot. Most people I've seen have at least the one person they can trust and/or talk to. I don't. I'm neither "attractive" nor very intelligent. So I've never really fit in in any of the social circles... My depression magnifies everything I feel and it gets propelled by insensitive things people say to me, all the time. Almost everyday. I don't know how long I can hold up.
Summer is miles and miles away, and no one would ask me to stay.
And I, should contemplate this change... to ease the pain.
And I, should step out of the rain... turn away.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby existential_squirrrel » Wed Mar 07, 2012 3:46 pm UTC

Good grief... I never realised how disabling unresolved trauma can be, whether on its own or combined with my severe depression and anxiety.
I want to share, but it would probably be really triggering. Help me?
FML... I just want to hide somewhere and never come out. I hate this pain, and the embarrassment of being overly jumpy to everything. I want to disappear




on a more huggable note: hugs, internet munchies, support, and love.

Geez... I can't believe I just admitted I need a lot of help
courage is about knowing when to pick yourself up and whisper to yourself, "I will try again tomorrow"
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Re: [SAFESPACE] Support thread for people with disabilities

Postby mochafairy » Wed Mar 07, 2012 3:49 pm UTC

*hugs and yummies and adorable pictures for anyone who wants them*
"YES. DO IT WITH CONFIDENCE" ~fortune cookie
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Amie » Wed Mar 07, 2012 3:56 pm UTC

existential_squirrrel wrote:I want to share, but it would probably be really triggering.

Hi. Maybe sharing will feel a bit like taking a huge load off of your shoulders. I wouldn't normally say that to anyone but people over here actually care and relate and maybe sometimes that isn't enough but if you do feel like sharing, this is a very, very good place. It's okay if it may be triggering. Your problems are real and important and they deserve a listen. Use a spoiler if you don't want to just put it out there in the open. I always do that.
{{{{{existential_squirrrel}}}}}}
Summer is miles and miles away, and no one would ask me to stay.
And I, should contemplate this change... to ease the pain.
And I, should step out of the rain... turn away.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby bluebambue » Wed Mar 07, 2012 3:59 pm UTC

existential_squirrrel wrote:Good grief... I never realised how disabling unresolved trauma can be, whether on its own or combined with my severe depression and anxiety.
I want to share, but it would probably be really triggering. Help me?
FML... I just want to hide somewhere and never come out. I hate this pain, and the embarrassment of being overly jumpy to everything. I want to disappear




on a more huggable note: hugs, internet munchies, support, and love.

Geez... I can't believe I just admitted I need a lot of help
It sounds like dear SB might be a good place for you. *hugs*
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Re: [SAFESPACE] Support thread for people with disabilities

Postby mochafairy » Wed Mar 14, 2012 2:27 am UTC

You know your latest diagnosis is not going to make your life easier when "sudden death" is listed as a symptom.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Kewangji » Wed Mar 14, 2012 10:33 am UTC

mochafairy wrote:You know your latest diagnosis is not going to make your life easier when "sudden death" is listed as a symptom.

Fuck :(

Sympathy and hugs if you want.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby mochafairy » Wed Mar 14, 2012 6:05 pm UTC

Kewangji wrote:
mochafairy wrote:You know your latest diagnosis is not going to make your life easier when "sudden death" is listed as a symptom.

Fuck :(

Sympathy and hugs if you want.


Thanks.

Apparently it's not bad enough to need surgery, at least at the moment. I guess that's a plus.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby setzer777 » Sat Mar 24, 2012 12:34 am UTC

Spoiler:
setzer777 wrote: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!


Coming up on a year soon and relationship is going wonderfully!

On a depressing note, I have become aware of how much Texas sucks when it comes to disability rights. For one thing, the legislature decided a while back to make huge cuts to state disability services. More recently, my girlfriend (who is about to graduate and looking for jobs), was initially told by the Texas Workforce Commission itself that she couldn't get accommodation for the typing test. There are things I like about this state, but it sure pisses me off pretty often.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby mochafairy » Sat Mar 24, 2012 8:57 pm UTC

setzer777 wrote:
Coming up on a year soon and relationship is going wonderfully!

On a depressing note, I have become aware of how much Texas sucks when it comes to disability rights. For one thing, the legislature decided a while back to make huge cuts to state disability services. More recently, my girlfriend (who is about to graduate and looking for jobs), was initially told by the Texas Workforce Commission itself that she couldn't get accommodation for the typing test. There are things I like about this state, but it sure pisses me off pretty often.


Congrats on making it to a year!

And yeah, most places in the US suck for disability. I actually can't think of a good place to have one in the US. It's pretty much a competition of "which place is the least craptastic" and "how much am I willing to fight". If, for no other reason than to make a point, you could always keep a phone contact with a lawyer's phone number. Most disability associations (like the American Diabetes Association, I know for sure) have lawyers specifically for discrimination issues. I'm not as well versed in CP as I should be (my sister in law has CP), but some quick googling does show that at the very least you can use generic disability lawyers, if she wants.

And congrats on making it to a year!
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Re: [SAFESPACE] Support thread for people with disabilities

Postby mochafairy » Thu May 10, 2012 5:42 am UTC

Sorry for the double post, but I just kinda need to clear my head.

I was diagnosed with a disability 10 years ago today. Part of my brain is going "it's just another day", another part is going "you made it!", another part is going "how different would those years have been without this disability?"

Does anyone else go through this? Okay, I guess a better starting question would be "does anyone else actually remember the date they got their disability label?"
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Menacing Spike » Thu May 10, 2012 5:49 am UTC

mochafairy wrote:Does anyone else go through this? Okay, I guess a better starting question would be "does anyone else actually remember the date they got their disability label?"


I do wonder, as the disabilities in question radically shaped the person that I am. I don't wonder too much, as it would probably be unhealthy.
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Re: [SAFESPACE] Support thread for people with disabilities

Postby natraj » Thu May 10, 2012 6:30 am UTC

i think it is probably fairly common to wonder how things might be different if...

i certainly have occasionally wondered the same thing. i don't have any kind of date when i first became Officially Disabled, though, it was a gradual thing for me and there is not any kind of place to pinpoint.

i don't know. it is hard to say how would life be. it is a big part of who i am.
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I'll answer your impatient questions. Still --
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Re: [SAFESPACE] Support thread for people with disabilities

Postby Angua » Thu May 10, 2012 11:42 am UTC

I'll spoiler this because it isn't really that serious compared with what most people in this thread go through:
Spoiler:
So, I have different lengthed legs - 14mm difference, which is actually pretty significant. It's mainly only affected me by being a major nuisance when buying shoes (many shoes can't be altered, and often putting a lift on the bottom means I lose all the grip, which is a bad thing for things like walking shoes) so I've never really thought of it as a disability. However, it's also left me with mild scoliosis, and I can't stand barefoot for long lengths of time without getting lower back pain (I generally get around this by moving around, or standing on one leg). However, now I'm going to clinical school, I'll have to be in surgery, for a couple hours at a time, in the sterilized clog things they have. I was planning on getting a removable heel made for that, but my SO told me that more of the shoes don't have heels, which would mean it would just slip out! So, I sent an email asking about it to the administrators about it, and got a reply which sort of made it sound like they didn't quite believe me, and wanted me to get a consultation at the orthopaedic centre (which confused me). I went to the gp (as you need a referral), and thankfully he was a lot more serious about it, though he was also a bit confused about why they wanted me to go for a different consultation, especially given that leg-length problems are normally referred to podiatry anyway. So now he's writing to a different person at the medical school who he says will be a lot better about trying to sort out a solution. The gp even told me that I might have to buy my own shoes, which I told him I'd offered to do in the email I sent, but they'd said it was absoutely not allowed due to possible contamination. He said that that was a bit ridiculous, and that they had to make reasonable allowances for people with disabilities, and it seemed pretty reasonable to him. I hope that turns out to be the solution rather than the other person's, which had been 'we'll ask the surgeons not to make you stand up too long' - which, when I can't stand an hour would be a bit difficult.

So, now I'm worried that by the time I get there, all the people in the theatres will be pre-disposed to being a bit annoyed with me. I'm also a bit annoyed that they didn't just ask for a conformation from the gp (which he said was all that was really needed) rather than them telling me to go to some specialist, which wouldn't really be able to help that much. I was even more annoyed when they asked if I had a special interest in surgery when they were telling me it would be that much - I know that it varies from firm to firm, but on the surgical rotations you can spend almost a day in there if you so chose, and I'd hate to have an entire half of medicine denied to me because of this. Surgery still has a lot of sexism in it, and I don't want to go in already being seen as weak.
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