Madhouse Stories

 

No One Cares About Crazy People by Ron Powers, is written by a father whose two sons have been afflicted by schizophrenia. One of his sons committed suicide. The book alternates by chapter between giving a factual history of society’s treatment of the mentally ill and telling the story of his sons’ descent into mental illness. Powers says in the introduction that he initially planned on only writing the factual history of mental illness and leaving his sons’ story out of it. He then realized that he could not tell one story without telling the other. I could not read either of the stories without reflecting on my own or my cousin’s story of mental illness.

***

Last May my cousin Stefan died by suicide. When my mother told me the news I gasped in horror and I cried, and I grieved but the truth was I was not entirely surprised by Stefan’s death. In fact, I had long feared he would die by suicide. Stefan suffered from schizophrenia. I knew the rate of suicide among those afflicted by schizophrenia was high and I knew Stefan had attempted suicide before.

When I told a friend about Stefan’s death she asked if we had been close. We certainly hadn’t been close geographically, as he lived in Romania and I lived in New Jersey. We had not seen each other since I was twelve and he was eleven, when our families spent a vacation together in the mountains of Romania. We never saw each other again after that vacation and for many years we did not speak to each other either. About two and a half years before his death, we reconnected on Facebook. While we didn’t have some of the more traditional markers of a close relationship, we did form a bond over something we had in common: mental illness.  One of the first things he said in his initial Facebook message to me was “I think maybe you and I are the normal ones.” Then he directed me to a song he related to. It was the Gnarls Barkley song “Crazy.”

When Stefan first contacted me, he was in a mental hospital in Romania. I was surprised that he was allowed to use the internet from a mental hospital because that had never been an option for me when I was in mental hospitals. I was even more surprised when he posted pictures of the mental hospital, its surrounding grounds, and the other mental patients with the hashtag “madhouse stories” because in the United States that would be considered a serious breach of privacy. Within the mental health system in Romania, he seemed to have a level of freedom that was unfathomable in the United States. Stefan wondered which system was better and said he would go mad in an American mental hospital.

Stefan read my writing about the time I’d spent in mental health facilities. I’d expressed how isolated and dehumanized I felt by my lack of freedom; I’d been put in solitary confinement for days, I’d lost control over what and how much I ate, I was told that I could not hug my mother when she visited me in my prison. He said I’d been treated like shit and that perhaps I’d been treated worse than he had been. I felt that regardless of how he was treated, he had suffered as a result of his mental illness more than I’d suffered as a result of mine, for he had schizophrenia whereas I had depression. Powers says “But even among the many devastating diagnoses of mental illness, schizophrenia stands unique in its capacity to wreck the rational processes of the mind. It is to mental health as cancer is to physical health; a predator without peer and impervious to cure.” (xv)

I know that many, if not most people with mental illness have been treated much worse than either Stefan or I were. Society is not and never has been kind to the mentally ill. In chapter after chapter of No One Cares About Crazy People, we see just how cruelly the mentally ill were and are treated. We see countless examples of the mentally ill being abused, abandoned, neglected, persecuted, demonized and dehumanized.

We see that contrary to stereotypes of the mentally ill, both of Powers’ sons are kind, caring, charming, intelligent, hard working and talented. I remember how charmed I was by Stefan when he was a child and how devastated I was to learn that he had descended into schizophrenia as an adult. Yet I learned that schizophrenia had not changed his essential goodness and that I was still charmed by who he was as an adult.

A chapter of No One Cares About Crazy People addresses the deinstitutionalization movement. On the surface it seemed like a good idea because many institutions were awful places and this would give the mentally ill a chance at freedom but the movement ended up being a disaster because society failed to provide the mentally ill with appropriate supports in lieu of mental hospitals, so many mentally ill people ended up homeless. Stefan told me he feared ending up homeless one day and could picture himself deliberately getting committed to a mental hospital just so he would have something to eat. Both of us were dependent on and living with our mothers as a result of our mental illnesses and the fear of homelessness has crossed my mind.

I always knew a problem in the treatment of schizophrenia is that schizophrenics often decide that they don’t need to take their medicine because they feel there’s nothing wrong with them but until I read Crazy People I didn’t realize that denial of one’s sickness had a name-anosognosia. Anosognosia can strike after long periods of wellness and compliance with medication. It happened with Powers’ sons and I noticed hints of it in Stefan. He told me he’d been free of symptoms for three months and was preparing to start work again but that he missed his hallucinations because they kept him entertained. He posted statuses and messages that I found alarming, but I felt helpless to do anything about it. Those who are much closer to their schizophrenic loved ones often feel helpless as well.

I cannot begin to fathom the levels of pain Powers must have experienced at losing a son to suicide but losing Stefan was hard for me because I’d lost a flesh and blood connection who knew what it was like to walk the lonely and terrifying road of mental illness. I was furious to learn that the Romanian Orthodox church would not officiate Stefan’s funeral because they considered suicide to be an unforgivable sin. He had died from a very serious mental illness and I couldn’t blame him for his death any more than I could blame a cancer patient for their death.

Powers’ surviving son is doing well now. He has recovered from the worst of his mental illness and in many respects is thriving. I’ve also recovered from the worst of my mental illness and am mostly doing well now but recovery is not an all or nothing linear process and I did end up in the psych ER a few months after Stefan’s death. Once the terror of the episode had passed and I realized I was going to be discharged from the ER and returned to my regular life, a second wave of grief hit me as I thought about Stefan and how he would never have that chance. I do not hear voices in my head like those afflicted by schizophrenia do but as I walked into the sunshine of the hospital parking lot, I could hear eleven-year-old Stefan’s voice ringing out through the mountains of Romania.

In the forward of Crazy People Powers says he hopes you do not “enjoy” the book but are wounded by it. Indeed, it would be hard to enjoy a book that depicts such real and bleak suffering and I did not “enjoy” it, but I am glad to have read it.

The last chapter of the book is titled “Some one Cares About Crazy People” and in it Powers takes a cautiously optimistic tone about advancements in the treatment of and attitude toward the mentally ill. I hope those advancements continue, for the sake of people like Stefan, for the sake of people like me, for the sake of people like Powers’ sons, and for the sake of all those who battle mental illness.

When Online is Out of Line: The Scarlet Letter

Whenever someone was banned from that forum I was a part of, the moderators posted an image of a troll being struck by a bolt of lightning and the word ‘banned’ appeared under their user name. They would also be added to a thread titled ‘banninated’ which served as a kind of banning hall of fame. It included a list of the people who were banned, a description of the reason they were banned and a link to the thread in which they were banned. The rest of the thread was devoted to mercilessly mocking the banned members and speculating about their lives. This of course, was in addition to the mocking and speculation that occurred in the original thread in which they were banned as well as the mocking and speculation that occurred in various other threads at random times.

If the banned member was active in the Facebook group associated with the forum they would be removed from that group upon their banning. Many current and previous members of the forum would unfriend or block the banned member on Facebook upon hearing of their banning.

Before I was banned I would sometimes participate in the roasting of banned members. It gave me a sense of camaraderie and a feeling that I was a part of the community. Once I was the one who was banned, knowing that I was being torn apart by the community and that I had become a persona non grata felt awful.

It was as though I had been branded with a scarlet letter but instead of wearing an A for adultery I was wearing a B for banned. I was an object of scorn and a punchline of jokes. In being represented as a troll I had been dehumanized and rendered as ugly on the outside as I felt on the inside.

Perhaps being rejected from that community would have been easier if I’d had another community to turn to but I didn’t. Of course there are a lot of other internet forums out there and I did consider joining a few of them but ultimately decided not to. Who’s to say I wouldn’t be just as hated at those places and treated just as badly, maybe even more so?  The truth was that as horrible as that bad baby names message board could be, as far as message boards went, it was not one of the more horrible ones. In fact, I think it was one of the nicer ones.

The prospect of reaching out to people from my past was in the back of my mind but it was a scary prospect indeed. What if I was just as annoying, rude and immature as all those people on the forum said I was? What if all those negative things those people said about me were true?  Why would anyone want to be friends with someone like that? People had been friends with me in the past and had applied positive descriptors to me such as funny, intelligent and empathetic but that was then. I had changed over the years. Maybe I had, as one forum member suggested, experienced a decline in my mental abilities. Maybe I had become, well, the kind of person who got banned from message boards.

There were people from the forum who even now, liked me but maybe those people were wrong about me and everyone else was right about me. After all, my best friend from there had been banned herself.

I drew comfort from my forum friends who told me that being banned was not a reflection of my worth and that those horrible things those people had said about me were a reflection on them, not on me. Yet my ties with those comforting friends seemed tenuous. I feared they would ditch me like Karen and Weasel had. Then I would literally be friendless.

Fear and loneliness continued to eat away at me until one day I decided to start making friend requests and sending messages to friends from my past. I knew I was taking a risk but decided it was a risk worth taking and I would just have to hope it turned out better than when Bernadette and I had decided exposing Marcia’s lies was a risk worth taking.

Me Too

Never before have I seen two simple words have such an impact on so many people. The first friend I saw the ‘me too’ from had told me about some of her experiences with sexual harassment and assault so I already knew she’d been a victim of it.  But her post was followed by  ‘me too”s from friends of mine who had never told me about being victims of sexual assault/harassment before so it was news to me. And it wasn’t just two or three or four or five of my friends who posted “me too’.  Dozens of them did.

On an abstract level I knew how common sexual assault and harassment were. On an abstract level I felt sad for all the victims of it that were nameless and faceless to me. This Facebook campaign took the issue of sexual assault/harassment out of the realm of the abstract and in to the realm of real life for me. All those victims of it were not just numbers without a name or a face but people I knew and cared about. Their experiences were not statistics, they were tragedies.

After I’d been seeing ‘me too’ statuses for about 24 hours I wrote a status that said  “All the ‘me toos’ I’m seeing are heartbreaking. I’m lucky to not be able to say ‘me too’.”

That status wasn’t entirely truthful though. Years ago I’d had a scary experience with sexual harassment that left me feeling quite shaken. However since I hadn’t been raped or even touched I wasn’t sure if my experience counted.

The next day I decided that my experience did count. I know feeling like their experience ‘doesn’t count’ is one of the reasons women stay silent about being sexually harassed or assaulted.  Even though the campaign only called for women to say ‘me too’ and not to share their stories, I decided I wanted to share mine. I wrote:

“I said I couldn’t say ‘me too’ yesterday but there was that time a strange guy banged on my windows at night, saying “Hey baby, my name is Mike, I’m going to stick it in you.” I called the police. They asked if I was drunk and then they suggested it was an April Fools joke. The police came over and when they left the guy started harassing me again. I called the police again but they didn’t come back again. They told me to go to sleep but sleep didn’t come easy that night. Being threatened with sexual assault was terrifying for me so I can only imagine what people who actually have been sexually assaulted go through. Shame on all the “Mikes “out there and shame on all the gaslighting, victim blaming, minimizing law enforcement officials and members of society. My heart goes out to everyone who’s been a victim of sexual assault or harassment. Me too.”

Someone was wrong on the internet

Actually several someones were wrong on the internet. Allow me to share my latest encounters with people on the internet who were wrong.  They are both amusing and horrifying.

People periodically come in to my Facebook autism spectrum disorder group to post articles claiming that vaccines cause autism. There is no evidence that vaccines cause autism but there is plenty of evidence that not vaccinating causes potentially devastating and fatal diseases such as polio and measles. Therefore I have little tolerance for people who refuse to vaccinate their children and who spread lies and misinformation about vaccines. I have even less tolerance for these people when the articles they post claim that Andrew Wakefield is a truth crusader (that doctor who lost his medical license after his study linking vaccines and autism was deemed to be a fraud) and that holistic foods cure autism.

When I told that person her article was crap she told me to get woke and see Vaxxed. I’m not sure what exactly ‘get woke’ means but I know that Vaxxed is some bullshit anti-vaccine propaganda documentary. I will not be seeing it. I was also told that if I knew my stuff I’d know that measles is caused by a lack of Vitamin A and was asked when the last time I’d heard of anyone having polio. She’s right, it has been a while since I’ve heard of anyone having polio. Do you think that could have anything to do with the fact that there’s a vaccine for it? When I took a research methods class in college one of the points that was frequently drilled in to our heads was that correlation does not equal causation. I cannot tell you how many times I want to shout CORRELATION DOES NOT EQUAL CAUSATION through the internet at all the morons whose inane arguments prove they do not grasp this concept.

My Facebook ECT support group is generally supportive and there are rarely fights there but the other day someone came in to the group to share links to his ECT group and blog. Since this was an ECT support group we all clicked on the links thinking they would be supportive of ECT but they were strongly anti-ECT. They claimed that ECT was traumatic, inhumane and caused brain damage. I’ve heard all of that before but the guy also said some things about ECT that I’d never heard before.

Apparently ECT causes a state of coffea.  I didn’t know what coffea was. I figured it had to do with coffee but I also wondered if it might have something to do with covfefe. The guy claims that ECT affects your body in a similar way to coffee and makes you like coffee less. It also makes you like bondage and 50 Shades of Grey less. I guess it’s a good thing I was never a fan of those things to begin with.

The restraints that are used to hold you down during ECT result in at least six invisible scars and the bite block that’s used results in dental problems such as bruxism. Is this guy trapped in 1952 or something? I’m proud to say that in addition to my six invisible scars from ECT, I also have a visible scar from it on my chest. This guy compared ECT to date rape and although he said the doctors who perform ECT inflict cruel punishment, he forgot to compare them to Hitler.

I’m pretty sure my brain sustained more trauma and damage trying to make sense of the nonsense that guy spewed on his blog than it did from ECT. He links to the blog of a woman named Alycia who underwent ECT. Even though she says ECT was helpful to her, that’s just because she’s ‘imprinted’ and is unable to recognize the trauma and damage it’s caused her. I kind of hope this guy finds my blogs on ECT and makes me the next Alycia. Regardless, to him I say ‘Bye Felicia.’

Now back to autism related assholery. Another guy claimed on his blog that all people on the autism spectrum are disqualified from being pilots and that there’s not a single flight organization in the world that gives clearance to fly to anyone with an ASD diagnosis. When I told him this was untrue, he said his personal experience showed it was true and that until I could provide a counterexample I needed to shut the fuck up. Then he called me a fucking bitch and said if I wanted to play hardball we would play hardball. To him hardball involved citing FAA regulations that referenced personality disorders. I pointed out that autism is not a personality disorder but that since he’d responded to me telling him he had his facts wrong by calling me a fucking bitch, he might have a personality disorder in addition to autism.

I decided to take him up on his challenge and link to counterexamples showing that people on the autism spectrum could obtain their pilot’s license. He said that the chance of anyone on the autism spectrum obtaining a pilot’s license was less than 1% and he was doing everyone a favor by claiming there was a categorical ban on piloting with an ASD diagnosis.

After deleting my comments and threatening to ‘blacklist’ me, he wrote a blog saying that due to the verbal abuse I’d directed at him, he would now be moderating his blog comments. That’s right, the guy who called me a fucking bitch accused me of being verbally abusive. Apparently self awareness is as rare a commodity on the internet as subtlety. This guy went on to say that he can handle people disagreeing with his opinions. It’s too bad he can’t also handle people saying he hasn’t got his facts straight. Maybe they were alternative facts.

For our final example of someone being wrong on the internet, let us turn to the Philando Castile case. My friend posted a Facebook status about what a travesty the verdict that acquitted the cop who shot and killed Castile was. This friend of hers comes in to say that the cop had a tough decision to make and was afraid for his life after Castile told him he had a gun that he was licensed to carry. According to him there was no reason for him to say he had a gun and once he did say it he should have allowed the police officer to reach in to his pocket and retrieve it for him.

I said that sounded like victim blaming. Castile was following the officer’s instructions when he reached for his ID. He couldn’t have been expected to know that the proper protocol was to let the officer retrieve his ID if that even is proper protocol. He obviously told the officer he was licensed to carry so that the officer wouldn’t freak out and think he was a dangerous criminal when he saw the firearm.  If someone was intent on shooting you it’s unlikely they would tell you they had a gun. It seems you just can’t win when you’re black.

This guy responded that if you’re going to possess something as dangerous as a gun you need to educate yourself on the proper precautions to take. He then added “By the way, I’m part black.” This guy was white as paste.

So those were my most recent encounters with people on the internet who were wrong.  There is no shortage of people on the internet who are wrong so I’m sure I will have many more encounters of the idiotic kind. I know you’re never supposed to argue with an idiot because they’ll bring you down to their level and beat you with experience but there’s a part of me that kind of enjoys arguing with idiots. It’s true that most of them are too stupid to realize how stupid they’re being and they rarely if ever admit they’re wrong or change their mind as a result of anything you say.  In many ways arguing with idiots is a frustrating and futile sport but there is fun to be had in it. I’m rather proud of some of the zingers I shot at the idiots. I’m amused by the memes my friends posted in response to the idiots and arguing against the idiots has been a bonding experience for us. My encounters with people on the internet who were wrong has also made for an interesting blog.

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My blog and my Facebook are getting a divorce

It pains me to end this marriage because it’s been a rewarding one. I’ve gotten a lot of views on my blog from Facebook. I frequently see it mentioned that social media is one of the best ways to increase traffic on your blog. I like the way Facebook has allowed me to easily share my blog with my family and friends.

There were things about my life that I wanted my family and friends to know but that I’d never told them because I could not find the courage to speak out or the words to express what I had to say. When I wrote a blog the words came to me so much more easily than they would have if I’d expressed them in speech. Indirectly sharing my thoughts, feelings and experiences through my blog was so much less scary than directly talking about them with people, even though in doing so I was sharing my story not just with my family and friends but with the whole world.

However, the marriage between my blog and my Facebook has caused me and some of my loved ones too much stress and drama and I see too much potential for future stress and drama if I allow the marriage to continue.  Remember how I said in a previous blog that the issue with someone getting upset over how a loved one of theirs was portrayed in this blog had been resolved? Well, um, let’s just say I spoke too soon. And of course the guy I referred to as Dick in that blog made a guest appearance in the comments section, where he threatened me and my friends with legal consequences for what we’d said about him on my blog.

All that drama came about as a result of me sharing my blog on Facebook and certain Facebook friends of mine making an issue out of the things I wrote in it or sharing them with friends of theirs who made an issue out of it. Dick’s threats don’t exactly have me shaking in my shoes because I know he’s full of shit (I also know he’s reading this blog. You’re free to do that, Dick, but please don’t leave any more comments. Same goes for your “friends”) but I’d prefer to avoid that kind of drama if at all possible.

I’ve learned the hard way that some of the people on my Facebook friends list were really not my friends at all. I’ve been accused of being an asshole for unfriending some of these people. I am an asshole for many reasons but unfriending those people is not one of them.

I tend to get hurt when anyone unfriends me and I’m not big on unfriending people myself. I do not unfriend people because they annoy me, because I disagree with them politically or because I don’t interact with them much. However, if you are going to stir up drama and stress in my life as a result of being my Facebook friend without also enriching my life through your Facebook friendship, you can bet your ass I will unfriend you and I will not consider myself an ass for doing so.

Although my blog and my Facebook will be ending their marriage, they will not be ending their relationship.  After this blog post I will be disconnecting that button that automatically shares all my blog posts to my Facebook feed but I may still manually share some of my blog posts on Facebook. The more personal, potentially drama stirring blog posts will not be shared but the truth is you never know what’s going to cause a shit storm on the internet. One of the worst internet fights I’ve ever seen was over napkins.

If you’ve been following my blog through Facebook, I invite you to bookmark it, to subscribe to it through WordPress or through e-mail because I still want to share my thoughts, feelings and experiences with you.

I’ve heard it said that people tend to give a false impression of their lives on Facebook, to make them seem better than they actually are and that comparing your own life to the lives your friends present on Facebook can lead to lowered self esteem. My therapist refers to Faceebook as the year-round Christmas letter.

Some people seem to think based on my Facebook profile that I’m happy, successful and well-liked. A friend said to me that on Facebook I enjoy life more than anyone she knows but she knows Facebook is not real life.

So lest you think based on my Facebook profile that my life is all cute dogs, funny jokes, ridiculous selfies, delicious desserts and fabulous vacations, I invite you to my blog to read the full story and get to know the real me.

Survey Says…

*This is my own personal version of my last Facebook status, which I cut and pasted from someone else. I decided to try to give answers that related to Trump  and to the questions being asked.*

 

Why not take a break from negativity and learn about each other? 😃

  1. Who are you named after? I was named after Kira Agrounova, the main character in We The Living by Ayn Rand. Kira lived under a totalitarian government in Russia that she refused to obey or give in to.Our current president has dangerous liasons with Russia and is trying to institute a totalitarian regime in this country. Be like Kira and resist.
  2. Last time you cried?

There has been so much to cry over since Trump became president. The Muslim travel ban and the attacks on mosques for starters. Contrary to what Trump thinks, the tears that have been shed over that are very real.

  1. Soda or water?

If my friend prefers soda while I prefer water that is a simple difference of opinion that does not harm anyone and our friendship will not be affected. If my friend voted for Trump while I voted for Hillary, my friend has given power to a dangerous tyrant who will harm me and the people I care about. Therefore, I feel betrayed by my friend who endorses something I find abhorrent and our differences may be irreconcilable.

  1. What is your favorite lunch meat? Donald Trump and his administration are full of baloney.
  2. Longest relationship?

Has Trump only been president for 12 days now? It feels like it’s been much longer.This relationship isn’t working. We need to end it.

  1. Do you still have your tonsils?

Do I still have my freedom? Do I still have my constitutional rights? Will I still have them if Trump gets his way?

  1. Would you bungee jump? Bungee jumping scares me a lot less than Trump does.
  2. How many years at current job? Trump is not going to create a bunch of new jobs. Immigrants are not taking your jobs. Starbucks did a good thing by pledging to offer jobs to refugees.
  3. Do you untie your shoes when you take them off?

If you don’t understand why a Trump presidency is so awful because it’s not directly threatening you right now, try putting yourself in someone else’s shoes.

  1. Roller coasters?

The 2016 election was one hell of a roller coaster ride and the next four years are sure to be a roller coaster as well. Unfortunately there have been more lows than highs and it’s been more terrifying than thrilling.

  1. Favorite ice cream? Ben and Jerry’s Impeach Mint ice cream.
  2. Favorite thing to do?

Speak out against Trump, although I wish I didn’t have to.

  1. Football or baseball?

Being president is not a sport, it’s not a game and it’s not a fucking reality show contest.

  1. Leggings or jeans?

I’m a member of Pantsuit Nation. Hillary should be our president right now.

  1. What are you listening to?

To my heart, to the news sources that are reliable and to the people who know what they’re talking about. If more people had listened to those things, maybe we wouldn’t be in this mess right now.

  1. Favorite color? Not orange, that’s for sure!
  2. Tattoos? Those Holocaust survivors with tattoos from the concentration camps are experiencing trauma and flashbacks because they see the similarities between Trump and Hitler.
  3. Married?

LGBTQ people recently won the much deserved right to marry. Now the Trump administration is threatening to infringe on their rights and enable discrimination against them.

  1. Hair color?

I have no idea what’s going on with Trump’s hair but that’s the very least of my concerns.

  1. Eye color?

Imagine how America looks in the eyes of the world with Trump as our president.

  1. Favorite food to eat?

Wouldn’t it be nice if Trump was using 14 billion dollars to feed the hungry instead of building a useless wall?

  1. Scary movies or happy endings?

It feels like we’re living in a scary movie right now. I can only hope for a happy ending but at this point I’m afraid I’ll have to settle for an ending where we don’t all die.

  1. Android or iPhone?

Get on the phone and call your representatives to tell them how you feel and what you want done.

  1. Chevy, Ford or Buick?

All better presidents than Trump.

  1. Favorite holiday?

Trump tried to make his inauguration day a holiday. It should be a day of mourning.

  1. Beer or wine?

I don’t drink but sometimes I feel like I need to get drunk to cope with the world now. Other times I wonder how anyone who wasn’t very, very drunk could have possibly thought voting for Trump was a good idea.

  1. Night owl or morning?

I don’t know how Trump sleeps at night. I’m up all night worrying about the future of this country and about what new horrors will greet me in the morning.

  1. Favorite day of the week?

Normally Friday is my favorite day of the week but you know which Friday I did not thank god for? Friday, January 20th, 2017. That day was unluckier than all the Friday the 13ths combined.

 

Just Say No to Secret Slacktivism

Just used my kids to get out of a speeding ticket.

Actually I don’t have kids and I don’t drive mostly due to autism spectrum related issues (which is not to say that no one on the autism spectrum can be a good driver or a good parent.) but I fell for one of those joke statuses and was asked to post a joke status of my own in honor of 2017 autism awareness.

I was also asked not to hate the person who sent it to me and not to reveal the secret. I don’t hate anyone who sends me those kinds of things but I do hate those kinds of things and I will reveal the secret because no disorder whether it be autism, cancer, depression, muscular dystrophy or anything else should be turned in to some silly secret facebook game in the name of raising awareness.

If you want to make a difference instead of choosing from 16 silly statuses to post, go learn 16 facts about autism, listen to the experiences of 16 people with autism, donate 16 dollars or 160 dollars to an autism related organization, volunteer 16 hours of your time to an organization that serves people with autism (make sure the facts you’re getting are accurate and that the organization is actually acting in the interests of people on the autism spectrum. There’s a lot of misinformation out there about autism and some organizations that are widely opposed by people who are actually on the spectrum.)

And remember, people on the autism spectrum want your acceptance more than they want your awareness.

My Latest Facebook Status

The one good thing about Facebook’s news feed turning in to clickbait is that I no longer have to look at inspiration porn news stories that objectify people with disabilities in order to show the extreme kindness of the person who treated them in a patronizing manner. Unfortunately there are plenty of those stories all over the rest of the internet.

I’m sure I’d be preaching to the choir on my friends list so this public service announcement is going public:

People with disabilities are capable of Googling themselves. People with disabilities are capable of feeling hurt, angry and embarrassed.

People with disabilities do not exist to inspire “normal” people with all the obstacles and challenges they’ve faced and overcome. People with disabilities do not exist so that when they’re treated with basic human decency “normal” people can feel all warm and fuzzy about it.

Of course you should be kind to people with disabilities, just like you should be kind to all people but allow me to share my perspective on what kindness is and what kindness isn’t.

Kindness is not allowing that disabled boy on the other team to score a winning basket so that you can be hailed as a hero on social media. Kindness is not laughing about the way that disabled woman decorated your cake and upon being informed that the girl has a disability, telling Facebook all about how you were nice enough to accept the cake and thank the woman for doing her job. Kindness is not telling Yahoo News all about how you took the disabled girl to prom when no one else would.

Kindness would be giving the disabled boy on the other team a high five and congratulating him on a game well played, regardless of whether or not he won or lost. Kindness would be genuinely thanking that disabled woman for decorating your cake, giving her a warm smile and wishing her a good day. Kindness would be taking the time to get to know that disabled girl you brought to prom, showing an interest in her as a person, not just her disability,

Kindness would be acknowledging that that girl made your night as special as you made hers, that you had a good time with her. It’s not just something you would have to say just to be nice either.

Disabled people are capable of being kind, intelligent, funny and interesting. You can enjoy spending time with them because they’re fun to be around, not just because you get a feeling of gratification out of being “nice.”

If you do all those things you may not get a bunch of Facebook likes and your name may not appear on Yahoo News but you will be doing something that is truly kind.

A Bad Day Turned Good

Today didn’t start off so well. In the morning I was upset about the mean things people said about me. I was messing around on Facebook and got tired of looking at the blank head that is my profile picture so I tried to replace it with a cute animal picture from the internet but I couldn’t get it to upload. I looked up a zillion tutorials on how to upload pictures from the internet and they all made it seem like it was just the simplest thing in the world but no matter what I did I couldn’t get it to work. I got so frustrated I started crying. My mother asked me what was wrong. I didn’t want to tell her about the mean comments so I just told her about the internet images. She told me that was a ridiculous reason to cry. A few minutes later she told me I shouldn’t whine about my silly little problems because my stepfather had just been told he might have to have his colon removed.

It seemed like things could only go downhill from there but they actually went uphill. When I was trying to make various cute animal images my profile pic I noticed to my surprise that my computer had a camera on it that I could use to take a profile picture of myself. I initially didn’t want to do that but when I realized I was never going to succeed at making my profile pic a fennec fox, I figured I might as well make it an actual picture of myself. Once I’d put up an actual picture myself I figured I might as well add people to my friends list and write statuses.

I know that seems like no big deal but to me it kind of was a big deal. It felt like a breakthrough of sorts. Several years ago I had a Facebook account with friends, pictures and statuses but I shut that account down. The reason I shut that account down was because I was ashamed of what my life had become. I was ashamed to share that life with my friends. I drifted away from my friends and would ignore them when they reached out to me because I just couldn’t handle all the shame and embarrassment I felt.

For years I had no friends at all. Then I started to develop online friendships and to re-connect with real life friends that I’d lost touch with. Today I sent friend requests to those people. I liked to fantasize about what my life could have been like if things had turned out differently and I’d made better decisions. My life involved a job, a husband, kids and friends. I felt that if I couldn’t have at least one of those first three things on the list, I couldn’t have friends either. Now I realize that’s not true. A true friend will not judge me for my life circumstances because my life circumstances do not determine my worth. Even if I have a lot of psychological problems and have not been successful in life I can still be a good friend and I still have valuable things to offer other people. Of course my therapists and my family have been telling me similar thing for years. Of course I knew it was true intellectually but I think today is the first time I felt it emotionally.

In addition to making friend requests, I blocked a bunch of people who made mean comments about me. It wasn’t that I was concerned about them harassing me. It just felt good to block them. It felt like a symbolic way of telling them “Fuck you, I don’t care about you, you have no power over me anymore.” Apparently some of those people are worried about me stalking/harassing them but they don’t need to worry because I have zero interest in doing that. An online friend told me that the people who care about me know I’m not a psycho stalker and that’s all that matters. She’s right. It doesn’t matter that a bunch of people I don’t like and don’t have to deal with anymore think badly of me. If taking potshots at me makes them happy they can knock themselves out.  I think this quote is appropriate: “The people who matter don’t mind and the people who mind don’t matter.”

The true highlight of my day was the 2nd annual GACK fun night. No, it has nothing to do with that gooey Nickelodeon substance, although I did have fun with it when I was a kid. GACK is pronounced like Jack and is made up of the initials of my godmother, her mother, my mother and me. It’s when we all gather together for dinner at a restaurant and have a good time talking about the past, present and future.  Last year it helped me when I was grieving the death of Dakota and it helped me this year too.

My godmother’s mother asked the always awkward question of “What are you doing these days?”  I started to feel uncomfortable and say “I’m not doing much of anything” but then I added “I’ve found an outlet in writing”. I told my godmother that I was writing a series of biographical essays for my family members and giving them to them for their birthdays. Since her birthday is coming up next, she’ll be the first to receive one. She was delighted to hear that.

There’s this blog too. I’ve only had it for about 10 days now but I think it has already helped me.