Sunday, July 24, 2016

Old Pals?

Old Friends: Bill and Donald

The End

This one made me laugh. I was out with husband, and I had forgotten my camera. I forget what we were going to go do. I said something like, "Do we have to take pictures to prove we did something, and that we lived life?" It's almost like that. I don't own a camera phone in my case, this is a 2000 era digital era camera someone gave me. The better Nikkon digital camera gave up the ghost the other day, probably got tired from so much picture taking.

Hot Summer

This picture was taken by me a couple years old. The sky may as well be orange and on fire since it's something like 105 degrees outside. The air conditioner keeps me alive. I wonder how people survived before air conditioning. I lived without it at a camp for three months and that was a hot summer but I was young and probably didn't feel the heat as much yet and could breathe. The air is so heavy outside, that I haven't even been able to walk in the apartment building hall but have paced back and forth in an inside hall to get a little exercise. Sometimes cold feels more cozy while heat just wears one out. I have a sheen of sweat all over me when its even just 75 degrees out now.

Thursday, July 21, 2016

The Super Humans

My husband and I used to talk about how the disabled are portrayed in media. I told him to be "worthwhile" as a disabled person you had to be successful or exhibit some special skill and make money and achieve fame in it.  He said his sister once made a snide comment about "flap with your fins" stories regarding the viewing of disabled people. It's like the only worthwhile disabled person is if you have some extreme talent or can teach yourself to paint with no arms. I note in this video, people missing limbs with otherwise healthy bodies seem to predominate. There are some paralyzed people. The media portrayal of "inspirational" disabled people gets extreme. It's all about proving yourself to the world. I am not against Paralympics, I think it is a good thing, but this advertisement bothered me on multiple levels.

It looks like another disabled person was bothered by what they saw too:

"So why do I dislike the fact that the Paralympians have been labeled Superhumans? It’s not because I don’t think they are phenomenal athletes. They absolutely are. In a way calling the Superhuman detracts from that fact.

It’s ironic how closely the term Superhuman is to the term Super crip.

Super crip is a term used my disability media critics to describe the phenomenon of celebrating disabled people in either a way that lacks meaningful context or in a way that seeks to effectively erase their disabilities except to add emphasis to the extraordinariness of their accomplishments. It’s not just that they’re amazing athletes. It adds a degree of “Can you believe someone like that could do this?”

The 2012 ad is particularly guilty of this with its juxtaposition of scenes signifying how people became disabled (often violently) with images of them succeeding as athletes.

It does from A to B without looking at any of the context of how people get to B or for that matter who CAN get to B. Because athletic success, particularly for disabled people is not just a matter of having the desire to do it.

Which brings me to the repeated refrain of “Yes, I can” from the 2016 ad, which buys fully into the “to believe is to achieve” stereotype. It is not just a group of musicians, dancers, and athletes showcasing their skills. They really sell the myth.

Consider the scene in the career counselor’s office where the counselor tells a wheelchair user “No, you can’t” which is immediately followed but by that young man playing wheelchair rugby while screaming “YES, I CAN”.

The thing is “No, you can’t” is far more than just the words of an individual who has vastly underestimated your potential. It is a systemic reality. It is far more accurately an expression of “No, you can’t because we won’t let you”. Wheelchair Rugby Clubs do do not appear fully formed just because someone has the desire to play.

Getting to be a Channel 4 “Superhuman” is in many ways as much about luck as it is about skill and hard work. The reality is that access to athletic training for disabled people is limited to those who have physical and financial access to it. If there is no training available in your area or even if there is but you can’t afford it, all the desire and willingness to work in the world is not going to get you to the Paralympics."

An Experience With Another Autistic Person?

Even in one's community one needs to be wary of toxic people.. I think my narc radar has improved since going no contact. Whatever a person's diagnosis, I know I do not want to be treated badly anymore. I was at a disability group meeting for a book club, and a new woman showed up. She was friendly and asked me if I wanted to come to her drop in center and she told me she wanted to start a group for Aspies and those on the autism spectrum. In this disability group they do not know about me being an ACON and only know about my Lipedema, and disabilities that show like being hearing impaired.

I wrongly believed that drop in centers were for the poor, lonely or even physically disabled and those living on the edges of society but more on that later and remembering feeling glad this person was opening her drop-in center to autistics. I said, "Yes I would be very interested." She told the group she was an Aspie too, about being bipolar, and talked more about her "autism-Aspie" story. She was the director of the drop-in center via a peer counseling program. While I wanted to make sure this place was okay, I have always wanted to take part in a Aspie meet-up and have wanted the chance to meet more people and have some successful connections in this community. With the group, I was very eager. I knew two male Aspies as acquaintances in the community I could invite.

I did warn her I am housebound a lot but would love to be part of the group and maybe we could get it started and it could keep going on it's own and then I would come as often as I could like another community group I am in. Maybe we could put out fliers and advertise. Being Aspie, I have been involved in online Aspie groups and met now real-life although long distant friends in them, so having the chance to meet other people who face this challenge, was exciting to me. She acted friendly and talked to me just fine at this time. Sure she was a bit withdrawn and awkward but that was nothing I was not used to. I had my husband drive me to this place and he came with me. So it was just her and us, the first time. The second time, I invited this local male Aspie who I had met in the disability book group a year or so ago and was trying to get a message to the other Aspie I knew as well.  When the group was supposed to be held a second time, the other Aspie showed up but she did not show up. So he was kind of upset he drove there for nothing, and no group happened. The books for the group and place for it were locked up. She never apologized and started acting weirder. I just shrugged my shoulders and thought, "Well I will try one more time.".

Things got even more strange then, I noticed she started ignoring me and being overtly rude to me. Now I have been around other Aspies, including a close friend of me and my husband and even WORKED with autistic children in classrooms. Her autism seemed weird to me like she could turn it off and on like a spigot. I felt suspicious something didn't add up. Friendly for a time with smiles and then cold as a fish. Maybe she was higher on the spectrum but that didn't make sense, she spoke of going to meetings in our state capital and was highly organized. She seemed able to socially function among movers and shakers, I would be scared to even talk to. I know Aspies get diverted and distracted, I do all the time. Sometimes my voice will go monotone or my mind will wonder off, but I even learned the basics years ago, say hello to people etc.

I got some bad vibes that worried me as I met up with her. Something seemed odd about her like she was far more career grasping then I have ever seen an Aspie be and higher functioning in some ways while trying to appear to be lower functioning. The second time I met her, I thought in my head, "She doesn't seem to be vulnerable like autistics and Aspies are". She also seemed to be very wealthy from things she talked about including vacations, trips, two highly successful adult children, and other matters. It was weird because the drop in center is in a very poor side of town.

She was the boss at the drop in center and I noticed other people seemed to make paths for her and you knew she was in charge no matter what. This kind of surprised me. Most Aspies or autistics do not exhibit such strong signs of "leadership" and keeping people "in check". People almost seemed afraid of her. A friendlier assistant director was there, we talked to as well. The place only had a few clients coming in, 2 or 3 at most. I talked to them but they were more quiet. We colored in adult coloring books a few time. I was still checking the place out and was glad to have a place for the autism group. One thing with the director, she told me she had this Comfort Dog, and the dog started making appearances with her later. She was so high functioning seeming, I thought she was training the dog for some program until I realized the dog was HERS.

Anyhow the third time, I and my husband show up for the time of the group meeting and we enter the front room of the Drop-in Center. I feel weirder about being there because I am finally starting to suspect the place is mostly for those who are heavily medicated and don't just suffer from garden variety depression and anxiety but full blown psychotic mental disorders with full hallucinations and time spent in the psych ward. I have been diagnosed with PTSD in my past and struggle with depression but never have been hospitalized for any mental disorder. I don't judge people who have, but I noticed a lot of the programming at this place was focused on people successfully "recovering" after psych ward internments. The focus was to get them employed again and self supporting. I felt odd there as a very physically disabled person knowing I am unable to work in my physical condition.

Anyhow we come a third time for the group, she the director of the Drop-In Center is sitting there, only 4-5 feet away and I say hello, and she flat out ignores me and my husband. I am VERY UNCOMFORTABLE. I joke and try to add levity to the situation to get her to speak to us and allow for distraction and other matters but time passes with her giving us extreme silent treatment. The group where we are reading a book on Aspergers together is due to begin. My husband is not the confrontational type so busies himself talking to someone else in the room. I had the thought, "I do not want to beg this person to talk to me". I am trying to let go of people pleasing and other behaviors that have only dug my scapegoat hole deep. So I sit there and stare straight ahead too after trying to get her to talk to me two times. I talk to the person my husband is talking to and then I have us get up and leave after waiting 25 minutes. There goes the Aspie group. I already know I am not coming back.

The whole situation was so strange. I later wrote her a letter asking her why she did not speak to us and saying that I had a hard time understanding her version of autism and maybe she needs to explain this better to people so there is more understanding. She never responded back.

I am familiar with autistics who go mute, but this seemed like the hard cold freeze-out of a narcissist. I've been down that road too many times not to know what it feels like. She wanted me gone, maybe because she knew I was only going to bring a few more clients in? She asked me to do art projects almost right off for the place but I wanted to familiarize myself with how the place worked being unsure of how drop in centers worked and the culture. My husband told me be careful of people who want something from you. My energy is very low and I am realizing my failure to "deliver" is impacting me socially.

This sounds bad but I decided to look her up on Facebook, and her wall was public. If any flying monkeys inform her of this article that may cease pretty quickly but I noticed the day I wrote her the letter she complained about people not understanding her. I think she meant me since it was the day I wrote her the letter. She was very angry, and this posting had a "how dare they" attitude to it, instead of a "I feel sad someone misunderstood me". She said she had "Kanner's autism". This blew my mind because Kanner's autism is where they do NOT desire closeness with other people. Aspies and autistics normally want connection but fail in getting it. Why is someone like that in such a people based position where there are people coming in especially with severe mental disorders?

I had a lot of time in special ed classrooms in my 20s, most people with Kanner's are totally non-verbal and usually lower functioning, they are not organized people directing drop in centers. I wonder who chose this woman to work with the severely mentally ill if her social skills were so extremely low? I did not feel like I was around an autistic who was going mute or too afraid to talk. I dealt with kids who were severely autistic in classrooms. My nephew when I was in contact with him had HFA [high functioning autism] between out and out autism and Aspergers and he was quiet all the time. You could ask him questions and he would ignore you, but it was not an offensive kind of ignore. It's kind of hard to explain, it was DIFFERENT then this.

Something didn't add up. She had pictures of herself meeting with politicians including talk of meeting with a lt. governor on her PUBLIC Facebook wall and one regional politician who is well known. Some of these photos appeared on a public Facebook page of a non-profit she ran related to the later Drop in Center. These are meeting I would be too afraid of and Aspie to deal with myself. She was at the center of all her family photos, she had a high number of friends. Most of my Aspie friends are under the 100 mark, if not lower.

Her Facebook wall seemed to have people constantly praising her and defending her. It seemed to read like my mother's facebook.  I have never seen this happen with another fellow Aspie. She even told this one guy off who was an Aspie too, they were actually talking about autism and he unfriended her.  On the public Facebook wall and on the public Facebook organizational wall where she ran a nonprofit, she bragged about buying a $2,000 dollar vaccum cleaner for her home and paying $5,000 and some odd change for the trained Comfort Dog. The dog is supposed to help her with the severe autism. I was right about her being wealthy, as there were pictures of her very lavish house with things like wooden floors, rich fabrics and decked out kitchen with stainless steel and espresso machine.

I have never met any autistic person like this. I was very weirded out by this whole experience. She seemed put off during one of those first meetings at my knowledge about autism. The drop in center really was not for me. It did bring me down some to attempt to integrate with the community again and have it end in failure. My sense of not belonging here has gotten greater and greater.  I have been more lonely then before. I feel like I don't belong anywhere.

Sometimes it is very hard. Humans are social creatures, they want people to talk to in real life once in a while. I do think this person treated me very wrongly. I do not trust them. I am glad I got away from them. It could have been worse, I had my husband with me knowing I needed to check this place out--I have been more cautious since the catfish incident and I listened to the "bad vibes" I got. My fault was in giving her a second chance but at least my time spent around her was very short. I supposed since autism and Aspergers is a neurological condition, it is possible other personality disorders could enter in, but I'll leave the actual diagnosis to the professionals. The whole thing confused and bothered me greatly.  Please tell me what you think of this experience. Thanks.

Monday, July 18, 2016


Seen on an Aspie board online:

"Because your value to them is based in the benefit they can derive from you. God may look at the heart, but man looks at your utility.

A friend I hadn't seen in a while told me he forgot how enjoyable I was to be around, and he wondered about why he didn't contact me more often. A girl told me that she was surprised to see how much I "had to offer." People will talk about what you "bring to the table". Utility. Benefit. That's what they are looking for.

They determine what benefit can be derived from you (are you funny, are you wild, can you come up with witty comebacks against people who try to abuse you, can they tell stories about you to their friends which will move them up higher in their own circles).  The less benefit they can derive, the less value you have to them. Autistics on the whole have little of the type of currency anyone is interested in. And to ****'s point, that also applies to anyone who can't bring the "goods" to the average social group: learning disabled, mentally challenged, differently abled individuals, whatever.

Most people feel they're climbing up some type of heirarchical ladder, and if you can't them on the climb, they don't want to be associated with you.

Unless you're someone that they can introduce to a group of their peers and feel that your presence will benefit the group as well as their own standing in the group, they're going to distance themselves from you. Society as a whole sees a benefit to providing some limited services to assist people in such groups (through charitable aid organizations and such) but few are willing to bring them into their own social circles as it will viewed as a social currency drain rather than a messed up as as that may be.

Enter the "useless eater" category and fail to be a "productive citizen" and there is a lot of judgement out there. Some may find this Aspie young man's words too cynical. There is truth in them however. I miss my old friends in my old town, many people there were okay with just BEING rather then DOING. My silent generation friends had gotten to that place as well as a few others. It didn't occur to me how RARE those people had become. There's a few everywhere but we need more. Are we bad people if we are not busy and productive every minute? Why do we always have to be proving ourselves?

Joan brought that being vs doing idea to me and I have thought about it a lot. I need being people not doing people. LOL My existence as a human being is not enough and some see people in that way.. Some of them tire me by the way they run around in constant career obsession and climbing the ladder.

There's many places in society now where you feel like unless you are of use to someone or have something to give, then you are not wanted. How much can you give? If it's a lot then you are more well liked? The narcissists see life as a give and get proposition. Who is of use to them? Who will help them get ahead?  For many thrown away by narcissistic families, because we came empty handed due to a variety of reasons, our only "use" was for narcissistic supply. This isn't just happening to socially awkward Aspies but to society as a whole.

I've been spending a lot of time alone lately besides time with my husband. I don't mind being alone so much as I used to when young. I talk to people online of course, but I got tired of proving myself, or having to prove myself or being made to feel always "wanting". I don't want to '"sell" myself or "struggle for position. How many feel this way, you are only as good as you are useful to someone? Isn't there something sinister about it all? What happened to true connection? It's out there but seeming to get rarer.

Whitney Thore: Living without Shame

I have written about the odd double messages being given to fat people in our media. One guy mentioned elsewhere that TLC is owned by Comcast which is part of a megacorporation that owns multiple mainstream food corporations. I agree with not being under the lash of shame, but I still stand by my belief that "acceptance" of these broken down and painful bodies is not doing us any favors. Whitney can refuse shame  and that's a good thing, but all we have to do is watch her show is to see that in reality fat is hurting her. She passes out exercising, hurts her back in the shower. Fat people need to make a stand for real treatment that will work or demand that real answers are sought.

One thing I notice is she was in far smaller sizes and more midsized for a very long time. Her history seem to match mine. She even mentions that she stopped having periods after only one or twice at 15. For me, they all disappeared at age 19 and would not returned unless forced by drugs like Provera until I was 47 years old [last year] and going on insulin. That means for almost 30 years my body had no periods on it's own.  Her doctors need to assess her for more severe forms of PCOS, her androgen levels and other health problems. Fat acceptance sometimes if taken to the extreme can damage those with extreme health problems influencing their weight. I used to make people angry in size acceptance telling them I know something is wrong, I have gained so much. There I was refuting the healthy and happy lies shoved down all our throats.

Whitney is a walking contradiction. Her fat is hurting her, she's ill but she still preaches the accept fat message and that bugs me. I agree with no shame or no discrimination but she could be using her fame to demand better answers, to confront CICO, to say LOOK something here more is wrong. Don't go with the shame and lies.  I am noticing now webwide people leave rude remarks on her videos and pictures. They say things like "she's just making excuses" and this one I hate quite a bit: "PCOS doesn't make anyone fat."

 She mentions her insulin resistance. Mine got very very bad. Oddly on insulin, my endless dark patches of dark brown skin have disappeared to go along with the returned periods. The back of my legs were covered in this brown velvet. During the weight gain, it was all over my neck, armpits and knees. It has faded ever since I have been on insulin. Perhaps some should get a clue that some of us are canaries in the coal mine for the endocrine disruptors or that there are extreme rare states of health.

She is fortunate she had the health and money to teach in Korea and go to the Great Wall of China. To me that is evidence she was exercising quite a bit. Travel takes walking. I worked at a camp in 1988. I was midsized and walked around 2-3 miles a day but unlike the other camp counselors, I wasn't firming up from all the exercising or losing weight. The food was gross and even there my intake was massively reduced, but it made no difference. She discusses getting assaulted. This happened to me when I was young too but in America. I had to be tough just to walk around.

She tries to lose weight. That fits my pattern. I fight the same 100lbs over and over. I lost that original 250 which 160 of has always stayed off from the peak weight but it's like running uphill. The crap they promise me that will work never does. My body swells up. I got gung ho, just so you all know, "to lose weight", since I could breathe better on that lung medicine, everytime I left the house, I was like "I gotta take a walk!" and diabetes was forcing very restricted eating and I didn't lose anything! It is enough to bring insanity to a person. And then one gets beaten up at every turn by society. "You're to blame, You're to blame", said over and over.

I have written before unless she has a serious eating disorder, she has something physically wrong even beyond the diagnosed PCOS. PCOS they don't do much for. I got a hormonal drug for PCOS for 15 years that helped take some weight off via lowering the androgens. I was forced off it for a kidney drug I need to stay alive and keep kidney stones away. Most people with PCOS don't even get that degree of treatment. I wish she did not tout the 1 in 10 women crap. I don't believe 10 percent of women have PCOS, and never will I believe that 11 percent of women have Lipedema. When they throw these numbers around they devalue the experience of those of us who suffer intensely from rare severe disorders.

Sadly, she has to get naked, for the photographers. How come they always want fat people naked in art but I digress? There are lower status in society is ever present and shows itself. If someone asked me to get naked for art, I would say I will wear a Victorian without a corset dress for you but naked, hell no.

If you read the comments at the video, her message is failing to get across. They call her fat pig, say she is an eating addict. Fat will never be solved in a stupid society that refuses to see outside of prejudice, but there too HAES and fat "acceptance" won't fix it either.  Whistling by the graveyard as fat comes on us, and literally weighs us down is not doing us favors either. 
God gave me enough self love to fight back. This blog came about from me saying Look I am going to tell my story and I don't care what mainstream society says, but I am going to demand more answers.

 I know even in some in size acceptance see me as a wild haired "crazy" nut, who refuses to buy into the mainstream.  I was silenced in some fat circles. It got serious on facebook groups and more. I rejected the two sides of accepting my "fat" and endless being beaten up by the diet industrial complex. 

Whitney if she wants real help, will have to see "outside the matrix", so to speak but the problem is, this society doesn't want truth about fat. The "acceptance of fat" goes hand in hand with the brainwashing about fat people.  While her message of no shame has no merit, I wish she asked some of the questions I do. Sadly the mainstream media would never allow it.

My articles on Whitney Thore