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I am still here! Against all odds. I am no longer working 60 - 80 hour work weeks. I am enjoying my children 24 hours a day and they are not in daycare/school for 10 - 12 hours a day. So much to thankful for, that it makes me mad to be called a victim. I may have wallowed in self pity for a while, but no. I am not a victim. At the end of the day, there are a lot of gifts. Kind of like your batteries needing changing. You are here to change them! How amazing is that given that you were given such a grim prognosis. Oh, and about grieving something you've never had. Absolutely. That makes perfect sense to me. Have you ever had anyone call you a victim? If so, how do you (or how would) you deal with that? |
I have a mother who has some issues, she takes a nice cocktail to keep her functioning and filtered.
When she says something stupid, fucked, up or uncalled for I call her ASS OUT, and ream her ass hard. I will NOT make any excuses she is my mother and she will *learn* to be polite and not be an ass hat. I do this because I know she can and giving her a pass is not doing her justice it only helps her out. I have a brother who is deaf, my parents coddled the fuck out of him and did the whole aww but he is deaf thing. I DID NOT, I kicked his ass, punched him, threw him on his back and will still do that shit and call him on his fucked upness. He does not get a special pass from me because we are from the same Momma and well my Momma did not raise us to be anything other than strong independent human beings. He has gone without talking to me for 2 years because I tell him *I do not want to hear your lame ass excuses* I hold him to the same standards as any fucking body else. I have a son who is an Aspie. I am hard on him, I check his 10 year old ass hard when he begins to be an ass hat. He pushes boundaries and I push back HARD, I am not gentler to him because I gave him life than any other person out there, matter of fact I am harder on my cubs because they are representin' me. When he does his lil I wanna be violent and then go catatonic shit I don't allow it, in this house we talk it out, if he chooses otherwise he knows life is not going to be *The Fairly Odd Parents* or *Transformers*. I have a couple sisterfriends one who has TBI the other cancer. There is NO male version of her, she is unique as they come, and with that comes challenges. Do I make excuses for her ass? Hell no, I will come down hard on her ass, make her cry and continue to do so, because I know she can and treating her otherwise enables her to live in a *disabled* space. She isn't, she has a challenging situation, she knows better, I don't give a rats ass that her brains are scrambled, (yes I talk to her this way) she is not going to be an ass hat, bitch, boundary crossing. I treat her as my equal because she is, we just have different thinking mechanisms. I do it because I love her and care. The other woman is just as strong, though her body and mind are not the same as a year ago, I won't give her the pass for being a jerk, if need be I will say to her what I have to say, it does not take much when you check someone, if they want to be seen as who they are they listen. I won't give anyone a pass. We are all adults, equals. Using the excuse that you have an illness to be a jerk, sexist, ass hat and other various things is not going to fly nor should it. |
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Thanks Violane. I'm glad that you haven't had to deal with the whole "pass" thing. I understand what you are saying about adult services being difficult to find, but they are out there. I have yet to seek a specific kind of help without being able to find at least one resource. Even here where I live now, which is almost rural. |
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I have lived through the judgements of what appear to be behavioral/lack of discipline issues. From my parent, siblings, other family members and complete strangers. I often thought it would be a much easier road if Bratboy's disability was visible - people seem to have much more compassion and tolerance when it is visible. For me, in interacting with others (who may or may not have disclosed a disability or neuro-diversity), I always try (and hopefully succeed more than I fail) to not hear their words in *my* tone or in *my* voice. I have spent the last almost 17 years finding ways to explain things to Bratboy or to teach him with different methods or to grasp that very teeny tiny straw of patience/tolerance when I think the reserves are spent. I do admit when I see post from folks who have disclosed such personal information, I, more often than not, try to apply to their words the same lens I would if I were reading my son's words. I then temper my response (if I make one at all) in a manner that I would want folks to use with Bratboy. I always try to do this from a place of compassion rather than one of dismissal. I have found that I listen/read/process a differently-able'ds words and probably give them a lot more thought than I do someone who hasn't said they are differentlyabled. If I see an asswipe post from a person who isn't differently abled, I might think, quickly, "What an asswipe." The same words from a DA person and I usually pause and wonder, "Where did that come from?" and then go on to backtrack posts to see if I can find the catalyst or disconnect. Maybe I am wrong in this and the DA person is just being an asswipe. Maybe I should have the same reaction regardless as to ability. *shrugs* Good points to ponder, at least for me. I really hope that DA's are being heard. Heaven knows if I had dismissed my son's experience in the world, mine would certainly be very rigid, less colorful and with so much less laughter and joy. |
I can be a dick, this I know. I broke up with someone for LYING to me about their disorder.
Not because they had it, because they lied to me and did not disclose this info to me. I guess you could say it's harsh and I've little empathy. I truly do believe though, having a difference be it invisible or not, DOES NOT give you a free pass to manipulate or deceive. That's how I roll though |
My experience has been to not say anything about having been on a respirator for 2 months and not having enough oxygen to my brain, which changed me physically, emotionally, and mentally.
Some changes have been for the good. I just celebrated 11 years clean and sober, have a loving spouse and terrific custom-made family, and am on the edge of completing a 4 year college program for a B.S. degree. Changes that are not so good is mainly that my bio-family doesn't recognize that inside challenges are also "disabilities". {By that I mean that my information processing is very different from the "norm".} They constantly expect and remind me of what I "should" be doing, without taking into account of what I am ABLE to do. It isn't for the lack of ambition, it's because I'm aware of what I'm capable of doing. My CM-family learn and help each other to overcome our challenges, and help each other with things that are difficult or impossible. For example, the 12 yo supervises me with knifes, tells me to be careful when we are walking, and everyone knows we can not keep a supply of glassware because I tend to forget that I can't hang on to them, which results in broken glass. Head patting is for sissies. Expect more and get more. When I hear people say, "Well, He/She was drunk ... {fill in the blank}", it makes me cringe, cause that's the same kind of "pass" being referred to in this thread. To say, it's ok for someone to treat someone else in a crappy way because "He/She is ... {fill in the blank}", not only excuses bad/undesirable behavior, but sets a horrible example for the young ones. Children need to see adults treating each other compassionately and fairly. |
Snow, thanks for your amazing post, and I'll be back to address that in a moment.
I hope that I am conveying what I want to in this thread, and from the responses so far? I think I am... Do I think the people in my world/life should know what TBI looks like? Yes. I do because we care about and love each other. So understanding each other is super important. I do think it's up to me (in large part) to educate those in my immediate world. In a very honest way. That way when I tell people that I love 17 times in a half hour conversation that a dog chased me down the street today they don't light themselves on fire. Instead, they steer me somewhere else. I made Snowy and Plato NUTS when balloon boy happened. I couldn't stop talking about it, being angry about it and looking for new information about it. I don't know how to stop myself when I perseverate. Which is awful. Definition?: perseverate - psychology: repeat a response after the cessation of the original stimulus; "The subjects in this study perseverated" Now, when I start to perseverate they grab me and say "Balloon Boy". Which is my cue that I'm doing my thing again. It's up to me to stop it though, otherwise I find myself alone while everyone else goes out and does something fun that does not involve "Balloon Boy". I suffered seizures for a long time, but haven't had one in about a year now. Certain foods and activities brought seizures on. I didn't want anyone policing me and walking around next to me with a pillow just in case I went down. Over time I learned how to really work at NOT doing things that caused seizures. So why am I sharing all this personal stuff? Because believe me, it puts me in a very vulnerable place. I know how mean people can be, and how sometimes things are funny. That aren't. I just really want people who are NOT differently-abled to know that their love and empathy is appreciated. Knowing that people care is the best feeling in the world. Caveat? Letting me do things over and over again and feeling sorry for me harms me. It does not help me. I understand the intentions behind feeling protective of someone with a different-ability, and I think it's great. What I find problematic is not holding us accountable for ourselves. It is disempowering to suggest a differently abled person cannot learn to self moderate. I guess I don't want to be read differently. If that means giving someone who makes an asswipe statement the same consideration that you'd give a person with a different ability then so be it. That just means we're spreading the same amount of compassion around to everyone. Which is never a bad thing, right? But I don't want special consideration. Because I have to live in the same world as the rest of you. With the same rules and laws. If I make a mistake, a police officer isn't going to give me special consideration. I'm going to get in the same kind of trouble as everyone else. So to give the false security that rules do NOT apply to me is truly in the end, something that disables me further. |
i was born with my disabilities. As a child (ok, who am i kidding...up to present time), my family treated me as a disabled, unable to do for myself child, and took every opportunity to point it out to everyone i came into contact with. i absolutely hated going shoes shopping, because every. single. dang. time. my mama and/or granny would point out (to the sales person) the reason my feet were different sizes and why i couldn't (or really, wasn't allowed to) put the shoes on myself and tie them. i didn't learn to tie my shoes until i was maybe 10 or 11. my mama would dress me for school every morning until i was a pre-teen. i never learned how to ride a bike, run, skate, play on a jungle gym, etc because i was told i would get hurt. (a running thought in my head that still applies to this day)
i ate it up. i would sometimes over-play the physical manifestations of my disability, like walking with a limp or holding my arm closer to my body, because i knew even as a child that this would get me attention and extra gum or candy from little old ladies. As i got older and started wanting independence, inside i was feeling frustrated that i wasn't allowed to do things, or at least given the opportunity to try, on my own. i remember when i first demanded to be allowed to go over to a friend's house by myself, instead of having my brother walk me over. She only lived 4 houses up from us, but my mama stood on our front porch watching me until i got to the door and knocked. She was truly terrified i would fall & kill myself. Her over-protectiveness stifled me, but i've never held it against her because she didn't know any better. When i was first diagnosed with CP, at 6 months old, the doc told her that i would never walk, talk or know who she was and that the best thing to do would be to put me in an institution and visit every week (this was in 1967, and was the accepted prognosis and placement for babies born with CP and gawd only knows what other physical disabilities). She didn't do that, thank goodness. When i got my first job, in fast food, almost daily customers would ask what was wrong with me. That took getting used to, lemme tell ya. When it first happened, i didn't know what the lady was even talking about, and just looked at her :| she finally said, "your arm, honey...what's wrong with it?" i would answer the question then get the same response every.single.time. A look on their face full of pity for me, and "bless your heart, you are so brave!". i came to loathe those words. Why was i so brave?? Because i was working?? Because i was trying to be "normal"?? i wore a brace on my left leg from infancy to the age of 12. i stopped the day i fell in a mud puddle at school and couldn't stand back up because the soles of the shoes were slick (back then there was one choice in style of shoes that could have a brace made into it...the old granny-looking dress shoe with no tread on the bottom. The metal brace was built into the shoe itself). That is still my most embarrassing moment ever....nothing like being a teen and having your peers standing around you laughing because you looked like their own personal Laurel & Hardy routine.... continually slipping & falling back in the mud over & over. i finally crawled out of the puddle onto the grass and was able to stand. Damon, i completely get the grieving what you never had thing. i've never had full use of my left side, and i grieved that for years, usually in the form of self-pity. i really would love to know what it's like to do things with 2 hands at the same time. But, i also personally believe that people who developed their disability/ies vs being born with them have it worse than me. i think it would be emotionally harder to have to deal with knowing what it used to be like to function and having to relearn how to do things. i lived on campus and attended a college for people with physical disabilities in Virginia, and became friends with several people with TBI's. It took me some time to learn why most of them were so very outspoken and occasionally down right rude and mean. Here, when i am aware that a poster has a TBI, i do tend to "read" what they're saying with a different lens, and i do tend to try & process what's being said through that lens. i don't "excuse" them when it's a snarky or whatever post, but i am aware that the TBI could have some impact on it. Come to think of it...maybe if i granted everyone that same lens in reading their posts, i might not automatically get offended or angry about stuff? SF, i loved this: >>I guess I am just really invested in being the same as you. and you. and you. I know I am always going to be differently abled, but there are parts of me that CAN be the same. That can only happen if my consequences are the same, and my personal accountability is the same.<< i agree and feel the same. i really appreciate it when i am treated the same as others until i prove i am not, or ask for help. Also....i wonder how much depression becomes a secondary diagnosis to the original disability, and what part it plays in the process of growing, accepting, learning new ways to function & cope? Like when Ezee was talking about his friend not acting on any of the help Ezee offered. i immediately thought "maybe the person is/was depressed?" |
SF, I am so glad that you started this thread, because I do have some questions floating around about different ways of being.
I am very glad Violaine and Christie posted, to see how some of my friends process taking to DA people on the Neurological Spectrum. I am not sure how head injuries play in, but probably similarly? I must admit I have seen posts, that were so clear and easy to understand for me, that would have seemed asshatish to someone neurotypical, moderated firmly....and then, when I questioned their treatment, have been told "so and so is not stupid. NO, none of us are stupid, but some of us do process things much more literally than others and I think that while I get the not giving anyone special passes, I also question expecting everyone to be able to communicate on the same level. Because of my own difficulties, I advocate for patience and love and not jumping to the worst possible conclusion automatically for other people. I hope I do not seem patronizing? I do admit to working really hard all my life to fit in and be able to communicate and behave in a socially acceptable manner. So yes, everyone can work on themselves and make improvements. Absolutely! :) Now, I am not saying that other people's reactions to persons who are DA is better or worse than mine, but I (from my ME place) am not a fan of tough love. I understand tough love is an option and that friends whom I love and admire are way more upfront than I am. But for me, having some neurological opportunities of my own, I don't expect a pass but I certainly appreciate those who are kind to me and who take the time to really hear me. I am not not not saying that we could coddle those people whose lives are constantly a disaster, just I think sometimes kindness and compassion does not have to be belittling or othering. |
I also want to give a shout out to June: Who has a special way of letting me know that I am just like everyone else here and must act accordingly. She either mocks me or tells me to get a job. Which I love. For some strange reason it makes me feel secure to know that I am as susceptible to the stink eye as the next person.
edit: as a fine example of brain injury i'd like to confess that I first posted this in the wrong thread. the misogyny/sexism thread. which i am sure made people think: wtf? THEN I freaked out when it wasn't here, and was sure June deleted it because she found me a job. :| |
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SF - I snipped your post for brevity. I wanted to clarify that my viewing my son's experience through a different lens (or viewing a DA's post thru a different lens) doesn't mean that I don't hold him (or them) to the same standard. If anything, in my son's case, he is held to a higher standard with me. Its my job to ensure he has the skill set necessary for the world with the same rules/laws/expectations as those without his challenges. I use the *lens* as part of my process in trying to figure out how he thinks. How he came to whatever place he is in - because for me, if I can figure out his perspective (which is usually so very different than mine) then I have a starting point to address the specific issue. I don't think this is coddling him or giving him the false sense of security you mention. This is, through lots of trial and error, what works best for him. I don't expect others to go through the same interaction process with him, but more that he has the skills to self monitor/reflect rather than standing in the midst of a heated interaction with someone and not have a clue as to how he got there. He doesn't get to be an asswipe any more than anyone else does - probably less because I never want him to use his challenges as a crutch/excuse or pass. |
Ms Apoca I am gonna jump off your post.
So what does one do when you have made it clear, a THOUSAND times with patience, with kindness and the person still does not respect those boundaries? Do I just chalk it up to the fact they have a disability and they are gonna use that as an excuse time and time again? Curious how you would handle this cause I don't have a soft buffer like yourself |
Ravfem? I loved your post. I feel like I just really got a peek at who you are, and I am impressed!
Apocalipstic? I want to reiterate again that I am NOT advocating for tough love, or for poor treatment of people who are differently-abled. I think we all have different cognitive levels and that should be the first consideration when holding people accountable. I think using compassion, love and patience is always the right way to go, and I am not asking this community to dogpile on differently-abled people who break the rules. What I *am* asking for is for people to consider what giving special treatment to somebody means. For everyone involved. |
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Seriously though, i agree completely that when i am treated like everyone else, i really, really appreciate that and i admit that i immediately respect the person more because of it. It's like they are letting me know that no, i'm not special (well...not in that way anyway :cheesy: ), and that they respect me enough to treat me fairly, on the same level as "normal" people. i've had people be afraid to touch my left arm/hand. Depending on my mood, that either hurts or pisses me off. OH!! and another thing!! i soooooo much prefer it when people who have questions ask me, not the people who know me! Ask away!! i would love to educate you a little!! |
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I didn't at all mean to imply that you coddle you son. If I did I want to apologize to you, because that would be an awful thing to say. I smiled when you said "Bratboy" and knew from what you wrote that you are all kinds of great as a mother. I totally am for giving consideration to *where* a person is coming from, but not so much for allowing challenges as a crutch/excuse (which you worded so well, thanks). I think I wish we could give everyone consideration because it is not just different abledness that causes a post to read bad. It could be a bad day, a break up, a death in the family or a million other things that leads to an asswipe post. I hope I explained this better? |
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I like to think that I am a great mother - or at least the greatest mother I am capable of being! Thanks, tho - your words mean a lot. I think Snow has a great point in those who continue to blow past the boundaries, time and time again, despite folks having taken the time and energy and patience to try and help the DA understand the disconnect. I don't know what the answer is - but I find that with Bratboy, ignoring the unwanted behavior usually gets results. The moment I explode with, "STOP TAPPING ME ON THE FUCKING ARM", he takes that 179IQd DA brain and records it for future reference that that is a weakness and must be exploited at every possible turn. I also find this works well with the overly needy dog. Cesar Millan has something going with the communicating with energy as opposed to words. Maybe we have to find the language the other person understands. Maybe, there is no common language and we need to resort to energy. |
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Some people I just can't communicate with and stress me out even when I have tried to make clear my boundaries. When this happens, I have to just cut bait as it were, and have nothing to do with them again ( I have that option). They may be great people, but I can't go there. I know you can't do that with your son, with him I know you have to just keep on going no matter how much your head wants to explode. I can't even imagine what it must be like. So I think where we are different is I walk away and you confront. I have no idea which is better. I remove the person from my life at least for a while, 100% because I don't have the nerves for it. You, being a Mom don't have that option really. I wish sometimes I were more confrontational, but with my issues, it seems healthier to walk away. |
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So if using a different ability as a crutch is working for somebody (because people around them are co-signing that behavior) then there is no incentive to change. I want to be real careful of how I am discussing this subject, because I can never really know where anyone is coming from AND sometimes a different ability can make it hard for somebody to realize what is going on. I don't think (i hope not anyway) that anyone is intentionally thinking to themselves: I am going to be mean and shitty because I CAN. I just think that there is always room for the bar to be raised and a person to be told in a compassionate way that the rules apply to them. I believe that people will rise to the level that you are willing to meet them at. If that makes sense. Like in AA, people have to get there on their own with only the desire to stop drinking, right? But nobody else can do their work, it is truly only up to the individual that wants to stop. I hope I am making some kind of sense. |
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This is a normal conversation with my mom, who lives in TX and is a night owl. Mom: Go to walmart with me. Me: Alright, lets go. We talk awhile. Me: Hey mom, go see if there are batteries on sale. Mom: What kind do you use now? Me: I dunno. Orange tab. Mom: I thought it was brown. Me: That was from the aid that your dog ate. Mom: "laughing* Okay, I got you a couple packs. A 8 pack of batts can cost me 8 bucks. No, it's not much, but consider I have to change a batt every week or so. It adds up! The worst for me is if the damned thing breaks. I have to have it repaired every few months. Luckily, my repairs are cheap, about 5 bucks. Usually a plastic tubing breaks. Now to answer your question... I sometimes get called a victim. I often get funny looks because of my speech. I have that unmistakeable "deaf" voice. When I get called a victim, I just say "no I'm not". Then I hear "Oh poor you!" About that time I'm telling the "offender" to shut up. I'm not "poor." I'm a guy trying to make it in a hearing world. And yanno, sometimes, yeah, it does piss me off. When I work with residents (keep in mind I'm a CNA) of different nationalities that speak a different language primarily, I try to learn a few phrases in their preferred language. The same thing with friends. I try to show that consideration. But, it pisses me off sometimes when some people won't consider learning a few things in MY preferred language. I use speech out of necessity. I've no problem with speaking. But, please understand, I grew up signing in school and having interpreters. There are times I'd like to have the comfort of MY preferred language. My parents never learned sign language. My mom knows the sign for crackers (sighs... always had to have saltine crackers in my house, even now), the sign for "I love you", beautiful, and some of the alphabet. My dad knows "I love you." If you will indulge me, SF, I will use you for an example. You want to talk on the phone. I say "no." You get offended. I say "I can't read your lips on the phone." You say "I'll talk louder." *sighs* That's not the answer. Talking louder doesn't help me. If my back is turned and I can't read lips, and I'm busy and can't turn around, alright, I'll be a little more understanding if you do that. Slow down a little. Let me read your lips. And no, I'm not fantasizing about making out with you just because I'm staring at your mouth. These are all situations I deal with very regularly and how I get treated like a "victim". I don't like it. Sorry for the rant. :D |
DamonK,
Thank you for your examples of how you get treated as a victim. I can empathize with you, for sure. Not for exactly the same things of course, but for the same types of things. Two of my four kids decided to pursue ASL throughout high school, yet couldn't get a "language" credit for the classes. It was considered an elective. Which made me go round and round with the schools. I learn from the kids, because well, I want to know. I think it is perfectly reasonable for you to want people to learn a few things in sign. If we can learn "su casa es mi casa" "parlez vous francais" (don't judge my spelling) then we can learn some sign. Do you use a tty service for phone? Do people REALLY think you want to make out with them because you are reading lips? Seriously? I don't think I'd react well to that. Is there a reason your parents didn't learn much ASL? |
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