The Mythical *Pass* for Differently-Abled People

[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.

[SuperFemme]

i promise that this is a safe conversation.
all viewpoints are welcome.

[Corkey]

I don't have a brain injury so I really can't speak to the filters or how one has to use coping mechanisms. I do know that I take everyone at face value and at their word. I do try harder to understand when a person with a TBI is expressing a view point that I may not get right away. Is that a pass, no I don't think so, I think it is me giving that person more space to get their view point across. Perhaps because I know so many who do have TBI I don't jump to conclusions about what they have said.
My .02

[SuperFemme]

Originally Posted by Corkey

I don't have a brain injury so I really can't speak to the filters or how one has to use coping mechanisms. I do know that I take everyone at face value and at their word. I do try harder to understand when a person with a TBI is expressing a view point that I may not get right away. Is that a pass, no I don't think so, I think it is me giving that person more space to get their view point across. Perhaps because I know so many who do have TBI I don't jump to conclusions about what they have said.
My .02

No, trying harder to understand a person is not giving them a pass.
That is human compassion and we all need it!

I love the ways I've seen you be patient.

I'm speaking more about writing stuff that is outright wrong, and people giving a different set of rules to a person who has a different-ability.

I used TBI because it is what I can speak to personally, from a *me* place.

There are lots of things that can make our filters not work, or the way that we relate to others different, not just TBI.

I really hope other people come in and post from other perspectives, because there are so many.

Thank you Corkey, for your response.

[DamonK]

Online you would not know my disabilities.

In real life, you would have a greater chance of noticing I'm deaf. And have lousy eye hand coordination due to being blind in one eye.

I work hard daily at "passing" as a hearing person. I do this simply because I absolutely HATE being treated differently just because I can't hear the way others can.

I hate the jokes that come my way the few times that I just can't "pass". I'd rather it be ignored, because I've spent a lifetime appearing like hearing people.

I don't want a free pass.

I want to be accepted for who I am; no more, no less.

[SuperFemme]

Originally Posted by DamonK

Online you would not know my disabilities.

In real life, you would have a greater chance of noticing I'm deaf. And have lousy eye hand coordination due to being blind in one eye.

I work hard daily at "passing" as a hearing person. I do this simply because I absolutely HATE being treated differently just because I can't hear the way others can.

I hate the jokes that come my way the few times that I just can't "pass". I'd rather it be ignored, because I've spent a lifetime appearing like hearing people.

I don't want a free pass.

I want to be accepted for who I am; no more, no less.

I love this post and it so resonates with me.

The only time I get a little weird is when people become violent/angry with me for using my handicap placard when I park.

The placard outs me, but the world doesn't seem to understand invisible disabilities like TBI. Which can be frustrating and I don't know a good answer for that other than to be patient with people who get upset.

I want to let you know that here, you are accepted. Just how you are.

[Gayla]

For me, it kind of goes back to what I said in the other thread. We all come here from different places. While I can't say it's a free pass thing, I think I'm more likely to give the benefit of the doubt when I'm aware of external factors. From that honesty place, I also jump less quickly when it's someone I "know".

I think every one of us could find some excuse when we get called out for saying "bad" things. From physical factors to emotional issues to just plain having a bad day, there are always reasons. I guess the question for me is if I say something asshatish and then follow up with an apology and a "having a bad day" excuse, is that any more or less of a pass than someone who offers an apology and a "TBI" excuse.

All that being said, I think we each have a responsibility to participate on an appropriate level. I venture to guess that most of us have a reasonable idea of what appropriate is, or we learn very quickly. For those that truly don't know, and aren't capable of learning for various reasons, I'm really not sure what the answer is for that. I don't want to say, don't participate but I also can't see just letting someone run amok across the site because they "don't know better".

[Queerasfck]

Your post was brave and honest and the thread is really great Adele. I appreciate your honesty. Thank you.

If someone is doing the best that they can then what more can they do? I think that I do personally make exceptions for people who are differently-abled from time to time because of what I've read about them (from disclosure in their own posts).

A few years ago on another website I used to belong to a member/online friend I had was upset because he had no resources where he lived for a service he was seeking. He kept going on about how there was no help for him. I PM'd to help. I figured how hard could it be? Since it was a major city there were bound to be the resources and meetings he was seeking. So I worked and gathered up all the info I found after spending only a few hours on it. Gave him the phone numbers and addresses of multiple locations I had checked out (there were 12 locations in his area alone, so that gave me hope he would get what he was seeking). I even got him the times his group would meet. After a few days I PM'd to see if he had checked into any of them references and he told me a bunch of different reasons why none of them panned out. "They were closed, didn't exsist, was the wrong number, ran out of funding, etc."
I have to say it was sad and frustrating. I believe he didn't even try and from my POV it seemed like he was capable of calling at least one or two of the places. But maybe he really wasn't. He seemed capable in similar areas of his life.......but we had never met in real life. He continued to occasionally post about how nothing was ever available in his area and those services didn't exsist. So, you know I just moved on and didn't bring it up.

For the record it bugs me when I see *anyone* (differently-abled or not) continually making excuses for weird references in posts or inappropriate comments and/or just about things that seem to keep happening to them over and over again in their daily lives.

[Soft*Silver]

I am so glad you created this thread! I too am differently abled and I am still in the stage where I am battling people's perceptions of my capabilities. I get weary of people who want to keep me from doing activities because they dont want me to be hurt. I know they mean well but I am sorry. I need to learn my limits and I cant tell what they are unless I visit them and see where I can go before I need to stop....but I know their behaviors come from a loving place. I know they all gasp when I post on FB that I am going to ride a horse. Everyone close to me knows how bad my back is. I just cant give up hope that I will get up on a horse again. But that is a journey that is not done yet...

But you are talking about something different. You are talking about someone with a disability using it to their advantage so they dont have to accept ownership of their behaviors....that somehow being "impaired" makes it acceptable for them to be mean or deceitful, or hateful, or ..(fill in the blank) I have witnessed this before, where the person with disability says "I didnt know what I was doing because I (fill in the blank) oh no no no....especially no no no when they do it over and over again. Especially when they do it when its beneficial to them and hurtful always to someone else. Yes, sometimes a person can make a mistake and yes, we can forgive them but when its a constant, when it is a pattern, then it IS a mythical pass they seek.

Well, I dont want it. And I get really angry over people who use it to hide behind. "I screwed up because I am disabled" doesnt fly with me. I have witnessed people saying and doing horrible things, including being deceitful, and then turning around and using their disability as a shield from consequences. I have walked away from people who do this because there is truth to the old adage, that you are who you hang with. I work hard at being as functional as I possibly can be. I am WAY far from being perfect and frankly I have characteristics that make me a difficult person to deal with, but none of them have ANYTHING to do with my disabilities. It just means I am an ass at times. Thank god for my AA program that makes me look at that on a daily basis and accept that reality and forces me to work to eradicate it ... or end up drunk again. And I dont want to do that EVER again. I am grateful I have a program that truly teaches me what an ass I am...so that I can work thru it to get the part of me that is spiritual and beautiful more room to come out.

Good thread, SF...great thread, in fact...I am interested in hearing from other people!

[SuperFemme]

Originally Posted by gayla

For me, it kind of goes back to what I said in the other thread. We all come here from different places. While I can't say it's a free pass thing, I think I'm more likely to give the benefit of the doubt when I'm aware of external factors. From that honesty place, I also jump less quickly when it's someone I "know".

I think every one of us could find some excuse when we get called out for saying "bad" things. From physical factors to emotional issues to just plain having a bad day, there are always reasons. I guess the question for me is if I say something asshatish and then follow up with an apology and a "having a bad day" excuse, is that any more or less of a pass than someone who offers an apology and a "TBI" excuse.

All that being said, I think we each have a responsibility to participate on an appropriate level. I venture to guess that most of us have a reasonable idea of what appropriate is, or we learn very quickly. For those that truly don't know, and aren't capable of learning for various reasons, I'm really not sure what the answer is for that. I don't want to say, don't participate but I also can't see just letting someone run amok across the site because they "don't know better".

Thank you Gayla. Great post, and I totally get what you are saying.

I really really hope that my OP wasn't shaming in any way of those members who do go out of their ways for people. Because if it did? I failed at communicating. I know that people come from amazing places of love and compassion and empathy/sympathy when choosing to be aware of those of us who are differently-abled.

I believe in my heart that everyone is capable of learning. I think in the online context it can be more challenging to get a person like me to "hear" you when you come to me and tell me that I am being an asshat. I have to work super hard to be able to hear. Conversely, that is a choice I make. I choose to be open to criticism, new ideas and different ways of doing things. I choose to not be afraid to fail (and fail miserably sometimes) in a public arena.

There was a time when I chose not to do all of the above. Either way, it is an internal process and choice.

Amok amok amok amok! (sorry. i couldn't help it. i love that word.

[SuperFemme]

Originally Posted by EzeeTiger

Your post was brave and honest and the thread is really great Adele. I appreciate your honesty. Thank you.

If someone is doing the best that they can then what more can they do? I think that I do personally make exceptions for people who are differently-abled from time to time because of what I've read about them (from disclosure in their own posts).

A few years ago on another website I used to belong to a member/online friend I had was upset because he had no resources where he lived for a service he was seeking. He kept going on about how there was no help for him. I PM'd to help. I figured how hard could it be? Since it was a major city there were bound to be the resources and meetings he was seeking. So I worked and gathered up all the info I found after spending only a few hours on it. Gave him the phone numbers and addresses of multiple locations I had checked out (there were 12 locations in his area alone, so that gave me hope he would get what he was seeking). I even got him the times his group would meet. After a few days I PM'd to see if he had checked into any of them references and he told me a bunch of different reasons why none of them panned out. "They were closed, didn't exsist, was the wrong number, ran out of funding, etc."
I have to say it was sad and frustrating. I believe he didn't even try and from my POV it seemed like he was capable of calling at least one or two of the places. But maybe he really wasn't. He seemed capable in similar areas of his life.......but we had never met in real life. He continued to occasionally post about how nothing was ever available in his area and those services didn't exsist. So, you know I just moved on and didn't bring it up.

For the record it bugs me when I see *anyone* (differently-abled or not) continually making excuses for weird references in posts or inappropriate comments and/or just about things that seem to keep happening to them over and over again in their daily lives.

Thank you for this post.

You experience with your friend on the other site struck a chord with me. Because I've been just like your friend. The first few years after acquiring a brain injury are the worst, because you basically have to say good bye to the person you used to be. Which means grieving, and that can take a long long time to process.

I know that when in that frame of mind, I didn't honestly want answers. I didn't want help. I wanted people to do things for me. Which looks a lot different that accepting real help. By that I mean the kind of help you offered. People doing things for me wasn't really help at all, no matter how well intentioned. I have gone from not walking, talking, paralyzed on one half of my body and unable to swallow on my own to being a full time mother and spouse again. I would NOT have made it to here had I not made the choice to get busy living.

I also think your response was absolutely perfect, because it is inevitable that you are going to get sucking into the abyss of helplessness and darkness that some of us get stuck in.

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'm not asking that everyone dogpile on the differently abled people. Not at all. I'm asking people to maybe think about being real with us, to try starting a dialogue when things get said or things happen that would result in you approaching any other person.

Of course be kind and empathetic and probably throw in a little patience, but don't let things slide always just because a person is differently abled.

Most of the people on this site that I know of are pretty open about their different-abledness and pretty open to hearing people.

[socialjustice_fsu]

by this thread, Adele. For me as a social worker I am constantly keeping a check on my own perceptions and responses to others. The one's that have posted here have my respect and admiration to bring this kind of thing to the table. We can NEVER stop learning about one another.

Really good thread. Thank you for stepping up to the plate and articulating something that is both very personal yet so very public.

You are beautiful.

[Queerasfck]

Originally Posted by SuperFemme

Thank you for this post.

You experience with your friend on the other site struck a chord with me. Because I've been just like your friend. The first few years after acquiring a brain injury are the worst, because you basically have to say good bye to the person you used to be. Which means grieving, and that can take a long long time to process.

I know that when in that frame of mind, I didn't honestly want answers. I didn't want help. I wanted people to do things for me. Which looks a lot different that accepting real help. By that I mean the kind of help you offered. People doing things for me wasn't really help at all, no matter how well intentioned. I have gone from not walking, talking, paralyzed on one half of my body and unable to swallow on my own to being a full time mother and spouse again. I would NOT have made it to here had I not made the choice to get busy living.

I also think your response was absolutely perfect, because it is inevitable that you are going to get sucking into the abyss of helplessness and darkness that some of us get stuck in.

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'm not asking that everyone dogpile on the differently abled people. Not at all. I'm asking people to maybe think about being real with us, to try starting a dialogue when things get said or things happen that would result in you approaching any other person.

Of course be kind and empathetic and probably throw in a little patience, but don't let things slide always just because a person is differently abled.

Most of the people on this site that I know of are pretty open about their different-abledness and pretty open to hearing people.

I really appreciate what you are saying. These posts are all really a good learning tool. Also, I'm very glad you're here and posting.

[sweetcali]

What a beautiful thread. I agree that all too often there is a free pass given for bad behavior as in using an excuse for the behavior. I know that for myself and the changes that have taken place it has been your example of how to deal with the changes, your example of staying away from "victim" that have helped me to learn how to handle these changes within me.

I want to say a big thank you and much love to both you and Cal for living by example in by doing this it helps me to accept my changes and accept responsibility for them.

I think those that choose to use their "pass" are also choosing to stay within the victim stage.

sweetcali

(I sure hope this came out right)

[SuperFemme]

Originally Posted by sweetcali

What a beautiful thread. I agree that all too often there is a free pass given for bad behavior as in using an excuse for the behavior. I know that for myself and the changes that have taken place it has been your example of how to deal with the changes, your example of staying away from "victim" that have helped me to learn how to handle these changes within me.

I want to say a big thank you and much love to both you and Cal for living by example in by doing this it helps me to accept my changes and accept responsibility for them.

I think those that choose to use their "pass" are also choosing to stay within the victim stage.

sweetcali

(I sure hope this came out right)

I hope this doesn't mean that you are not going to fight fair in our upcoming wheelchair races.

We love you back, but I am so winning.

[Soft*Silver]

Cali, I loved it when you said "I think those that choose to use their "pass" are also choosing to stay within the victim stage". I so agree with you! I think thats what sets me off. I am so determined not to be called a victim of my disabilities. I am different now, but am not a victim by any means...

[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.

[Soft*Silver]

great points you bring here...

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.

[DamonK]

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.

First part, in reference to grieving:

It may sound odd, and I'll explain why in a moment, but I am 28 and at times I still grieve for what I don't have.

Hmm, funny that. I've been this way since birth. It's...awkward...to grieve for something that is the ONLY thing you've ever known. I don't know what it's like to see with two eyes, or to suddenly jump in a swimming pool on a whim. I don't know a world without checking my pockets before work, "Do I have hearing aid batteries?" In fact, last week, without thinking about it, I took 2 packs to work! I don't know a world where, in some instances, I politely nod, and read lips to finish a conversation, or a sentence, then say, "Could you please excuse me a moment?" then turn, and quickly change batteries, because my hearing aid is beeping at me and driving me batty, saying "Change me change me."

It's possessed. I swear it is.

Point is, I don't know another world, but these thoughts are what I have everyday, and situations I find myself in fairly often. Simple facts of my life.

Which leads me to point two:

I do NOT consider myself a victim.

I consider myself lucky.

You see, back then, with my situations... I shouldn't be alive today. My mom, around my birthday, calls me, crying, every year, still amazed and thankful that I pulled through -- 28 years later. And every year, there's one story she tells me. It's a story of grief, and resignation. But it's a reminder that miracles do exist. And I'll even share it.

My doctor's name was Dr. McGee. He was my doctor until I was about 7 I think. I don't know. I still remember sometimes he'd look at me with wonder on his face. Back then I didn't understand why. Now I do. Not long after my birth, Doc went to my mom's hospital room, crying. Doc was in street clothes, off duty... He told Mom how sorry he was and how he didn't think I'd make it through the night. I'd taken a bad downhill turn.

That is the only part of the story I remember. It connects the dots for me what I had to fight through to make it.

For me, at least, one thought crosses my head? How can I consider myself a victim when I know how lucky I am to be alive?

Then the annoyance over batteries seems quite insignificant when I remember....

[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.