Thursday, April 14, 2016

Disability Advocacy

I went to a seminar on disability advocacy and it had some good pointers. I may have to advocate for Para-transit services and to get some glasses.  Maybe we can keep our car running so I wouldn't be dependent on the bus, but I want to start using the community transportation services more during the day to get out more during times I am not housebound. I am legal to drive but because of my legs it is now super-limited. This would enable me to go do things without needing my husband to drive me.

 It interesting hearing the hints on self-advocacy and advocating for a group.  I realized this blog fits a "group advocacy" approach for different groups, fat people, Aspies, Lipedemics, ACONs and others. The word advocate means to speak and take actions in favor of a cause or issue. Well many causes are very important to me from fat people being treated well, to ACONs and others being free of abuse in their lives.

Advocacy is something most disabled people have had to do to manage in life. Some things I had succeeded on like finding a program for my dental work, and also for my hearing aids. One positive of this community is there are more resources. My life has changed a lot since I got the hearing aids last year, in terms of functioning and being able to talk to people. Disabled people also should learn the different laws that do support them, like the Americans with Disabilities Act, the Open Meetings Act and the Freedom of Information Act and to know what their exact rights are.  In my case, I have been accommodated most places I've asked, living in a smaller town people don't protest getting me benches and other things like at a church community meeting I went to. It can help to talk to others too. In my case, I had people share some concerns about the transportation system and give me some pointers on how to figure the system out.

There were times however I have not self-advocated in the past like when I encountered groups that met up or down stairs and who refused to move when asked nicely to another meeting venue. ACONS who are disabled are not used to getting their needs met and it can be hard sometimes to confront others and say "I can't hear you." or "I need another chair" or "Can the meeting be moved, I can't climb flights of stairs?". In my case, the kind of life I've had has forced more independence, there are people who are in my shape who live in group homes and the nursing home but it's been such that as I got older, I did have to learn to speak up for myself even for the sake of survival.  It is important for disabled people to be taught how to advocate for themselves and others.


  1. It is hard for an ACON to speak up to get their needs met. In disability, in everything. It takes a brave soul to step out of the abused state, back into the land of the living. This is what gets us stuck in abusive situations that, not only are we not heard, but we get hurt over and over. Some people say we bring this on ourselves, but the truth of the matter is, that no one wants to know the truth of the matter. And they won't get it anyway. Its like we have to step up and speak up or we continue to be abused.

    I've often said this is the way out of abusive relationships. Not depending on the other person to just get it. But responding deliberately, with full emotion, in each and every situation that confronts us. This is hard. But I just keep telling myself that this is what being alive is all about, and just continue. The only rest I get is sleep. I noticed that, so depression looms, but if I sit there long enough, the pain of the situation gets to me, and I have to live again. Depressed people get numb to pain, for them it is the only way. I tell them to just "feel" again.

    It is good Peep, that you can do it. Many can't, and I feel for them, however, we really don't have any choice. The universe didn't cave for us for being ACON's, it keeps the same rules. I think even in a perfect world it would be this way, to keep us going, to keep us alive.

    1. It is hard to speak up and get one's needs met. In my case, it became a life or death thing. Even the narc family tried to get me to do things like traveling in very cold weather that would get me put in the hospital. We can't depend on the people treating us rotten to change their behavior but have to step out and assert ourselves and it is difficult. Yes depressed people have numbed out and sadly and be abused more as they are afraid to show any emotions or stand up for themselves. I agree this is what being alive is about and have to keep putting one foot in front of the other. Yes the universe didn't make allowances for what we went through, we have to deal with things as they are. I know it's hard. I know I got tired of feeling like I had to make excuses just to exist and started making demands, but it was just to stay alive.

    2. Sometimes it feels like I'll be ripped to shreds at any moment, for any thing I say. There is a certain risk factor involved. I have a theory that as ACON's we are naturally big mouths, and that we just have to learn how to use it. And use it wisely, and with what is appropriate, no one taught us this. I kept feeling like I had to fix things all the time, or shut up. That my words are no good. As a result of thinking like that, I come across really effed up sometimes, that's why I get so misunderstood. And this is where the narc gets to attack, slamming down my motives as being no good. No one trusts what I have to say unless I have said it for a long time, and stood there with it. A backing up will cause me more grief, I have to remember that. But that is where authenticity helps me, it guides me through. I feel that way, and no amount of stuffing it down will change it. It will only make me feel unwell, and confused.

      Abuse seems to grow, it gets its start when we don't say anything, and snowballs from there. I was confused for my hubby recently said something so thoughtless, after me trying to be understanding, he is going through some bad stuff at his job. Then I started to think that maybe I should have just left him alone, to deal with it on his own. I think that would have helped instead of me trying to "cheer him up". lol It backfired. He got angry, and he showed this, not in a nice way though.

      But what was done was done. I stayed with that emotion of feeling awful, then channelled that emotion back to him, not as a way of being abusive back, but I responded to how it made me feel. He still was in no mood for it, but its ok, I did what I had to do. I don't know, the situation still has to resolve but I did my part.

      My point is, that when we do our part, that is all we have to do. We are not having to defuse bombs everywhere we go, just do our part, and sometimes as ACON's we don't feel like its enough, but it is. I've seen it work out that way. Do our part, then let it rest. Go on with something that makes us happy.

    3. I know what you mean. I know I have been hated for stands I've taken, literally HATED for being me. It's scary. I walked away from some really awful people but if I can't be real around someone I'm wasting my time. Yeah because of our upbringing, I know there is part of me that feels "afraid" everytime I assert myself like someone is going to make me pay or get revenge. Why wouldn't I? That happened all the time.

      I probably prefer to err on the side of having a big mouth, I was censored so so much though I am knowing the fakes, phonies and catfishers, I have to not let the world know so much about me because it will be used against me. I am very glad to have left my real name off this blog and need to be more judicious who I share it with. It sucks we can't be more relaxed and more vunerable but the world is full of too many sharks.

      Its hard with narcs because they have few emotions or none at all, they can take advantage over those who do have emotions and have feelings. I felt like I wasn't taken serious too for a long time. In the family, since I had been black balled and called "crazy" for so long, my words were ignored. I knew I had no choice but to walk from the whole mess, there was no fixing it and I got tired of banging my head on the brick wall. Some submit to evil families and give up kind of like Aunt Scapegoat but that's not me.

      Yes if we back up or take our words back or start apologizing--something I did way too often it means a worse thing for us. We are NOT heard, they have "won". Too many times I would back down and "hide myself" to keep the favor of too many rotten people. That's done now. I can't do it anymore. Even watching the troll come to my blog trying to assert her will over me was sickening. Telling me what to do...what place did she have?

      One thing I had to teach myself and this would apply to your husband, you are not responsible for his anger. Thats for him to work it out. It's worse in marriage too if one hides true feelings to "keep the peace". I had to battle some things out like this to. I hope things resolved soon.

      I tell myself things like "I don't have to impress a bunch of narcs anymore" and don't feel like walking on eggshells in my own life anymore. I'd rather be relaxed. I'm old and disabled and I've jumped off the "proving myself bus" when I left the creepy narcs behind. I've been doing more to bring happiness doing what I want.

    4. I know there are some people I know, that won't say a word, just agree with anyone, sometimes I wish I was like that (it would save a lot of headaches) but it would not make me happy. So I guess I do have a big mouth too, but I'm learning to make it work for me. Its about developing character. No one made any difference if they didn't have character. This also includes being ok with making mistakes. They are such a good way to learn, how do we learn without screwing up first? So I have to tell myself that, its ok.

      About my husband, I guess I didn't explain that one very well. He works in an environment that I can't imagine, and here I was trying to make him cheerful We always think we need to cheer someone up. He was wanting to be in his feelings when he got home, and I was interfering with that. It seems like "positive thinking" has permeated our society so much, we have been brainwashed into thinking this is what everyone needs. I now know I just give him his stew, then leave him alone. That is what he needs, to be left alone, and I think I give him attention because that is what I would want, not him. So I have to get out of my own self and understand another human being with different needs. I'm learning that too. Its ok.

      We have been censored so much. Its hard. I know this one woman that is a leader, and she is so different from everyone. Not a narc at all, she is completely present with everyone, but still, she is willing to speak her mind all the time, she is a role model for me. I think I am like that, or would have been like that, if my upbringing was good and loving.

      So sometimes its good to have good role models. Those people who stand out in a crowd, I think its our fear that closes us in. Many of the role models don't notice their fear so much. They seem almost fearless, but its that they can feel their fear, and not block it, I think that is what it is. Just looks fearless.

      Overall, you don't have to walk on eggshells. Why do we care what they think? Except for the people who care about us, people don't care about us. We ACON's get overinvolved in this too much. We worry about offending others, being misuderstood, being inappropriate. But when all is said and done, it is the overall affect of what we did that matters, not how we did it.

      Ok, I have to share this one. One time at a very important business meeting with clients, our leader came out of the washroom with the back of her skirt tucked into her hose. When she was informed of it, she turned to the wall and fixed it, then came back to the table, business as usual. She must have been dying inside, but you would never know. Its ok, I tell myself, do what I have to do.

    5. LOL I know I can't be the agreeing one all the time. Sometimes I will present my side without trying to oversell it or choosing aspects of their side, I agree with. I have a big mouth too, people get angry at me easily. Us Aspies are too blunt. I have to be careful and flub up things sometimes talking about myself too much or being too "mind blind" as to what the other person is thinking.

      I agree about the character, more of what you do then say anyhow. Oh thanks for explaining about husband, I know I got too busy trying to get mine calmed down or making him happy even over stuff I had nothing to do with. I had to stop this stuff because taking responsiblity for someone elses emotions got me too flustered. I care about how he is feeling but got too involved if that makes sense.
      I try to give him time to calm down or stew too. So yeah that makes sense. Most men need the alone time. Mine complains less and sometimes I have to dig out of him what is troubling him but I learned to only go digging if it's something big and longer lasting.

      Other humans have different needs. It's hard for me to figure them out. I have said to husband "What do you want?" He is kind of Aspie--not diagnosed if he was NT this would be harder. I know I get confused by people's motives and needs a lot. Sometimes I say something I think will help them but it doesn't or said the wrong way.

      The narcs take away our sponteneity, in my case I was always dodging revenge tactics and smacks, so I became too measured. Sometimes in groups I can find a flow on rare occasion if I am around NICE people but I know I come across different to others. Often it's best to just listen to people and not worry about myself at all.

      I envy the security in self others have especially at my age. They know who they are and are okay with it. They have found their niche in life. They had the foundation of love that told them they are someone in this world. This is the worse thing that narc/sociopathic parents do to ACONs. This is something I know I have yearned for. This is one place where my disability and inability to find a place in life has really done me harm. How does one achieve that they have a place when they are needed or serving others, but what about just having it everyday?

      I look at role models too and choose who is nice, I've done that a lot of my life. Most of the people who I see as secure in themselves don't seem afraid, they are not always testing and measuring themselves, they just ARE. How do they achieve this? I know one thing I have to undo like this raveled knot is having to just realize as a person I have worth, I don't have to impress, volunteer or prove myself anymore. I have a right to exist in this world even in a this physically oppressed shape. So no more walking one eggshells and being worried I said the wrong thing.

      So yes the ACON is drawn into this cage, worry, worry worry, the spontaneous relationships are gone. It affects them. We aren't as free.

      I am glad that lady continued business as usual. Its better for others, if one can just untuck the skirt and go on with business. I figure if I offend people now or said or did the wrong thing what I can I do about it? I can't sit around analyzing and trying to fit myself into a mold. It's boring and a waste of time. Even the narcs really never knew us because we were so censored. ACONS have to free their mind from the evil parents who told us every minute were unlikeable. Even finding being secure in one's self is worth every second of NC.