The Mythical *Pass* for Differently-Abled People

SuperFemme · 07-12-2010, 11:24 PM

I want to say something about the word "victim" because it gets thrown around a lot.

I know that for *me* I was a victim. Of a drunk driver. I had to go through that period of shock and awe that happens when you wake up from a coma and don't know who you are or where you or even your name.

I know that some of us were born with different abilities, some of us acquired them from traumatic things and some of us have illnesses which got us in the club.

It is normal (i think) to grieve for what you've lost, what you know will never be, and sometimes from frustration of not feeling "enough".

So some of us are stuck in that mode of grieving for longer than others. Some of us never get out of that space. That's just the way it is.

With that being said, I don't think it's fair for us (the collective us) to label people victims in such a negative context.

I think *I* am the one that gets to decide if victim fits me. I could be wrong, but it feels oogie to me to use the word in a negative context when talking about other people.

What else could we use? Idea's?

I tend to think of "stuck" when thinking about the times I've not been able to fight my way out of the darkness.

Soft*Silver · 07-12-2010, 11:29 PM

great points you bring here...

Quote:

Originally Posted by SuperFemme

I want to say something about the word "victim" because it gets thrown around a lot.

I know that for *me* I was a victim. Of a drunk driver. I had to go through that period of shock and awe that happens when you wake up from a coma and don't know who you are or where you or even your name.

I know that some of us were born with different abilities, some of us acquired them from traumatic things and some of us have illnesses which got us in the club.

It is normal (i think) to grieve for what you've lost, what you know will never be, and sometimes from frustration of not feeling "enough".

So some of us are stuck in that mode of grieving for longer than others. Some of us never get out of that space. That's just the way it is.

With that being said, I don't think it's fair for us (the collective us) to label people victims in such a negative context.

I think *I* am the one that gets to decide if victim fits me. I could be wrong, but it feels oogie to me to use the word in a negative context when talking about other people.

What else could we use? Idea's?

I tend to think of "stuck" when thinking about the times I've not been able to fight my way out of the darkness.

violaine · 07-13-2010, 12:41 AM

superfemme wrote:

I'd like to have a discussion about this, and hear honest feedback, because I've noticed that sometimes we are given "passes" by our fellow community members (mostly in the spirit of caring/compassion) and I want to talk about how that can or cannot invalidate a differently-abled person.

Thanks.

i really don't know that in my case, i've noticed within this or any other online community, any "passes". my interaction is usually to the 'topic' and less posting back and forth to individuals, or groups of people. i do write from my own aspergian space mostly, because that's a way that feels right or natural to me, instead of using lots of 'we' or 'us' comments -so that may be part of it.

a note about adult services being difficult to come by, please. in some cases the only option is to start the group, if someone is able to do so, like i did for adults on the autism spectrum. otherwise, i would find numbers disconnected; closed groups/servies; or funding issues- as EZeeTiger listed.

The_Lady_Snow · 07-13-2010, 10:54 AM

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.

SuperFemme · 07-13-2010, 10:55 AM

Quote:

Originally Posted by violaine

superfemme wrote:

I'd like to have a discussion about this, and hear honest feedback, because I've noticed that sometimes we are given "passes" by our fellow community members (mostly in the spirit of caring/compassion) and I want to talk about how that can or cannot invalidate a differently-abled person.

Thanks.

i really don't know that in my case, i've noticed within this or any other online community, any "passes". my interaction is usually to the 'topic' and less posting back and forth to individuals, or groups of people. i do write from my own aspergian space mostly, because that's a way that feels right or natural to me, instead of using lots of 'we' or 'us' comments -so that may be part of it.

a note about adult services being difficult to come by, please. in some cases the only option is to start the group, if someone is able to do so, like i did for adults on the autism spectrum. otherwise, i would find numbers disconnected; closed groups/servies; or funding issues- as EZeeTiger listed.

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.

Plato · 07-13-2010, 11:35 AM

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.

Apocalipstic · 07-13-2010, 12:08 PM

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.

The_Lady_Snow · 07-13-2010, 12:14 PM

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

SuperFemme · 07-13-2010, 01:32 PM

Quote:

Originally Posted by Plato

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.

Thanks honey. In case anyone didn't know we're married, Plato and I.

It was kismet that two people with brain injuries found each other. We were paralyzed on opposite sides of our bodies, so together we are a complete and functioning right and left.

I know that we both get our different abilities dismissed by our families. In some ugly ways.

I know that you and the kids understand that I cannot taste or smell. You all try to have food ideas that involve texture. The children know that the loss of two of my senses heightened the ones I have left. So if a stranger were to observe our family eat potato chips it would probably come off as very fucking strange. Everyone gingerly tries to fish a chip out of the bag without making crinkling noises. OR they dump them all out and get rid of the bag FAST so as to end the crinkling.

Noises hurt my head and make me feel very very angry. Paper is the worst I think.

We all take care of each other but nobody "gets away" with anything. Ever. We have a tough crowd. The kids have to have patience with two parents operating on limited short term and long term memory. So they are responsible for writing stuff down. Otherwise I am going to get mad and insist "I never said that".

Conversely, they both know how to use those very things to their advantage and will "work it". Sigh.

Thank god for chosen family.

Plato · 07-13-2010, 01:35 PM

Quote:

Originally Posted by SuperFemme

We all take care of each other but nobody "gets away" with anything. Ever. We have a tough crowd.
Thank god for chosen family.

Plus, our chosen family has grown by one for a few weeks.
She is learning some patience skills by osmosis .....

SuperFemme · 07-13-2010, 11:38 AM

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.

SuperFemme · 07-13-2010, 12:08 PM

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.

SuperFemme · 07-13-2010, 12:21 PM

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.

ravfem · 07-13-2010, 12:26 PM

Quote:

Originally Posted by SuperFemme

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.

ok first, this made me giggle.

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

), 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!!

christie · 07-13-2010, 12:09 PM

Quote:

Originally Posted by SuperFemme

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.

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.

SuperFemme · 07-13-2010, 12:27 PM

Quote:

Originally Posted by christie0918

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.

I think I mixed up a post with responding to what you wrote about and speaking to my own (adeles) feelings/experiences.

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?

Plato · 07-13-2010, 01:28 PM

Quote:

Originally Posted by christie0918

SF -
.... 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. 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.

This is an example of awesome parenting, imo, and NOT head-patting AT ALL!!

ravfem · 07-13-2010, 12:08 PM

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?"

christie · 07-18-2010, 01:04 PM

Quote:

Originally Posted by SuperFemme

I wanted to take a moment to remind everyone that this thread is about ALL differently abled people.

Not just neuro-disabled.

We have so very many types of differently abled people here and I want to make sure that we don't put everyone into a box. Sure, there are those of us who have cognitive issues. But a wheelchair, being hearing impaired, multiple sclerosis, cerebral palsy, an amputee and the rest of the different abilities all tend to lead to the general public thinking that all of it is cognitive (meaning we are all slow) issues. We find people talking louder, and slower and often times in a tone reserved for three year olds.

First of all, cognitive challenges don't = slow. Secondly, talking to DA'd people with the assumption that all DA = Cognitive really demeans us all as human beings.

This is just a gentle reminder, and not directed at any one person. I get super frustrated at the public perceptions around differently abled people and I want to make sure that this community steers clear of that.

If anyone has any questions please feel free to pm me.

thanks,

adele

Quote:

Originally Posted by SuperFemme

I really want to start a conversation about something near and dear to my heart.

That is the subject of personal responsibility when posting as a differently-abled person. As the Ambassador for such things I think it is an important conversation to have right now.

As some of you know I am differently-abled. I have a severe TBI (traumatic brain injury) as well as some other serious health issues.

What does that mean for *me*? It means that I don't have filters the way normal people do. It means that my frontal temporal lobe was SO damaged that my critical thinking and emotional response mechanisms don't work like yours. It is like using a coffee filter in place of an oil filter maybe. The way that my brain processes and regurgitates is from a very emotional place, and the filtering system that most people have telling them what is okay to say and what is not doesn't work like normal.

I have to live every day very differently than most people in a lot of ways. I have to be reminded to eat, to take medicine, to feed my children, to shower....the list is endless.

I'm getting to the point I promise.

This all means that I have to work a little harder if I want to be a part of society. I have to set alarms, use calendars and rely on the people that love me (truly love me) to keep me on track. Mostly, I have to rely on myself, because at the end of the day it is *me* who has to live with the consequences of not using compensation strategies to fill in for the things that I am lacking.

I have lived this way since July 26, 2003. That is almost exactly 7 years.

For the first three years (while I was in a brain injury rehab program) I really believed that it was the worlds job to understand me. I couldn't understand why I didn't get passes for my ridiculousness because of my head injury.

I now understand that it is my job to the work. That means I don't get a special *Pass* for my different-ability. It is not the worlds fault that I am like this and frankly it is an impossible request that the world compensate for me rather than me compensating for myself.

I don't WANT a pass. I feel angry when I do get one, because it is taking away the day to day work of being Adele that empowers me.

If I act like an asshole, I don't get to say: "I have a head injury".
If I am hurtful to others I don't get to say: "I have a head injury".
If I am racist or sexist or misogynistic I don't get to say: "I have a head injury".
If I am mean spirited and snarky I don't get to say: "I have a head injury".

I instead get to own up to my behaviors. For me, this can mean apologizing, listening (and hearing) when others come to me and say "that was kind of fucked up and heres why", it means writing and re-writing posts, and it means having others check my posts AFTER I've read and re-read what I've written before I hit the submit button.

I am not perfect and I own that there have been plenty of times that I have gotten lazy and complacent. For the most part, I have had to live with the consequences of that. Like Juney un-friending me in Facebook.

So I hope that we as a community can remember that although a person may be differently abled, we are all responsible for our own actions. Head patting and "poor poor baby" responses are diminishing and erasing. I don't know any differently abled person who wants to be pitied.

Pitied would look like me saying anything I want and nobody every caring because poor thing has a head injury.

Accommodated would look like me saying gross things and people calling me out just like anyone else.

Because if somebody got angry with me deservedly that would be a consequence of me not using my compensation strategies. And that needs to happen.

Just because I am differently-abled does not mean that I don't have to live by the same set of rules that the rest of the world does.

When I am babied, coddled, or given leeway that others are not it translates to me that I am indeed challenged and broken beyond repair.

THAT takes away my hope and incentive for living in the world as a human being just like everyone else.

I'd like to have a discussion about this, and hear honest feedback, because I've noticed that sometimes we are given "passes" by our fellow community members (mostly in the spirit of caring/compassion) and I want to talk about how that can or cannot invalidate a differently-abled person.

Thanks.

Adele -

While I appreciate your wanting to be sure that this thread is about all DA persons, I can't help but be just a tad confused at this point.

In your opening post, you specifically wanted to address accountability when posting as a DA person. You went on to speak of your personal experience with TBI, which, to me, falls into neuro-diversity.

I thought that you were wanting to discuss holding DA persons to the same standards in rules and expectations on this site in relation to adhering to the TOS.

While I am sure that physical limitations such as the ones you mention in your last post have bearing and can be related to to a person's state of mind when they post, I don't know how my having a permanent physical disability impacts my posting. I don't know how having a 23% disability of my knee allows me to have the mythical pass you speak of when I am accountable for the words I type - not how long it takes me to navigate going down steps.

I am really not trying to be argumentative and wanted to ask for clarification since my interpretation of your last post seems to conflict with the OP. If the direction of the thread has now changed to talk about how physical disabilities allow DA persons this pass in real-time interactions, so will my participation in this thread.

Thanks,
Christie

SuperFemme · 07-18-2010, 01:28 PM

Christie I am sorry that this is your perception of what this thread is about.

While I can only speak in absolutes about my own different abilities I am not unable to advocate for all different abilities.

Also, please understand that a bad knee is not a disability. Once you lose all use of that knee, then you cross over into the realm of differently abled.

07-13-2010, 12:41 AM	#3
violaine Timed Out How Do You Identify?: atypical Preferred Pronoun?: plague words and phrases Relationship Status: love wise guys of the avian world Join Date: Nov 2009 Location: wekiva springs basin Posts: 3,236 My Photo Gallery Thanks: 9,934 Thanked 3,293 Times in 1,301 Posts Rep Power: 0	'we' are given passes? superfemme wrote: I'd like to have a discussion about this, and hear honest feedback, because I've noticed that sometimes we are given "passes" by our fellow community members (mostly in the spirit of caring/compassion) and I want to talk about how that can or cannot invalidate a differently-abled person. Thanks. i really don't know that in my case, i've noticed within this or any other online community, any "passes". my interaction is usually to the 'topic' and less posting back and forth to individuals, or groups of people. i do write from my own aspergian space mostly, because that's a way that feels right or natural to me, instead of using lots of 'we' or 'us' comments -so that may be part of it. a note about adult services being difficult to come by, please. in some cases the only option is to start the group, if someone is able to do so, like i did for adults on the autism spectrum. otherwise, i would find numbers disconnected; closed groups/servies; or funding issues- as EZeeTiger listed.

07-13-2010, 10:54 AM	#4
The_Lady_Snow MILLION $$$ PUSSY How Do You Identify?: Kinky, Raw, Perverted, Uber Queer Alpha Femme Preferred Pronoun?: Iconic Ms. Relationship Status: Keeper of 3, only one has the map to my freckles Join Date: Nov 2009 Location: La Reina del Sur Posts: 22,488 My Photo Gallery Thanks: 32,231 Thanked 80,077 Times in 15,670 Posts Rep Power: 21474874	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. __________________ "If you’re going to play these dirty games of ours, then you might as well indulge completely. It’s all about turning back into an animal and that’s the beauty of it. Place your guilt on the sidewalk and take a blow torch to it (guilt is usually worthless anyway). Be perverted, be filthy, do things that mannered people shouldn’t do. If you’re going to be gross then go for it and don’t wimp out."---Master Aiden

07-13-2010, 12:08 PM	#7
Apocalipstic Pink Confection How Do You Identify?: Femme Preferred Pronoun?: She, Her, Ma'am Relationship Status: Dating Myself Join Date: Nov 2009 Location: Nashville Posts: 4,266 My Photo Gallery Thanks: 17,195 Thanked 11,362 Times in 2,838 Posts Rep Power: 21474856	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. __________________

07-13-2010, 12:14 PM	#8
The_Lady_Snow MILLION $$$ PUSSY How Do You Identify?: Kinky, Raw, Perverted, Uber Queer Alpha Femme Preferred Pronoun?: Iconic Ms. Relationship Status: Keeper of 3, only one has the map to my freckles Join Date: Nov 2009 Location: La Reina del Sur Posts: 22,488 My Photo Gallery Thanks: 32,231 Thanked 80,077 Times in 15,670 Posts Rep Power: 21474874	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 __________________ "If you’re going to play these dirty games of ours, then you might as well indulge completely. It’s all about turning back into an animal and that’s the beauty of it. Place your guilt on the sidewalk and take a blow torch to it (guilt is usually worthless anyway). Be perverted, be filthy, do things that mannered people shouldn’t do. If you’re going to be gross then go for it and don’t wimp out."---Master Aiden

07-13-2010, 12:08 PM	#18
ravfem Senior Member How Do You Identify?: i'm a girl Relationship Status: negative Join Date: Feb 2010 Location: Georgia Posts: 1,811 My Photo Gallery Thanks: 9,239 Thanked 3,125 Times in 1,270 Posts Rep Power: 1969286	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?" __________________

07-12-2010, 11:24 PM	#1
SuperFemme Timed Out How Do You Identify?: Permanently Banned 10/24/2010 Preferred Pronoun?: She. Relationship Status: Married (one of 18,000) Join Date: Nov 2009 Location: Atascadero, CA Posts: 4,933 My Photo Gallery Thanks: 2,309 Thanked 7,108 Times in 2,327 Posts Rep Power: 0	I want to say something about the word "victim" because it gets thrown around a lot. I know that for me I was a victim. Of a drunk driver. I had to go through that period of shock and awe that happens when you wake up from a coma and don't know who you are or where you or even your name. I know that some of us were born with different abilities, some of us acquired them from traumatic things and some of us have illnesses which got us in the club. It is normal (i think) to grieve for what you've lost, what you know will never be, and sometimes from frustration of not feeling "enough". So some of us are stuck in that mode of grieving for longer than others. Some of us never get out of that space. That's just the way it is. With that being said, I don't think it's fair for us (the collective us) to label people victims in such a negative context. I think I am the one that gets to decide if victim fits me. I could be wrong, but it feels oogie to me to use the word in a negative context when talking about other people. What else could we use? Idea's? I tend to think of "stuck" when thinking about the times I've not been able to fight my way out of the darkness.

07-13-2010, 11:35 AM	#6
Plato Timed Out How Do You Identify?: Permanently Banned 10/24/2010 Preferred Pronoun?: ProVerb Relationship Status: Happily Married Join Date: Nov 2009 Location: .. lemme check ... Posts: 97 My Photo Gallery Thanks: 130 Thanked 130 Times in 42 Posts Rep Power: 0	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.

07-13-2010, 11:38 AM	#11
SuperFemme Timed Out How Do You Identify?: Permanently Banned 10/24/2010 Preferred Pronoun?: She. Relationship Status: Married (one of 18,000) Join Date: Nov 2009 Location: Atascadero, CA Posts: 4,933 My Photo Gallery Thanks: 2,309 Thanked 7,108 Times in 2,327 Posts Rep Power: 0	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.

07-13-2010, 12:21 PM	#13
SuperFemme Timed Out How Do You Identify?: Permanently Banned 10/24/2010 Preferred Pronoun?: She. Relationship Status: Married (one of 18,000) Join Date: Nov 2009 Location: Atascadero, CA Posts: 4,933 My Photo Gallery Thanks: 2,309 Thanked 7,108 Times in 2,327 Posts Rep Power: 0	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.

07-18-2010, 01:28 PM	#20
SuperFemme Timed Out How Do You Identify?: Permanently Banned 10/24/2010 Preferred Pronoun?: She. Relationship Status: Married (one of 18,000) Join Date: Nov 2009 Location: Atascadero, CA Posts: 4,933 My Photo Gallery Thanks: 2,309 Thanked 7,108 Times in 2,327 Posts Rep Power: 0	Christie I am sorry that this is your perception of what this thread is about. While I can only speak in absolutes about my own different abilities I am not unable to advocate for all different abilities. Also, please understand that a bad knee is not a disability. Once you lose all use of that knee, then you cross over into the realm of differently abled.