So this will likely just be one of those posts where I'm preaching to the choir but I'm so frustrated about this garbage I keep seeing (and have been seeing for years) that I have to vent.
Let's start with the basic truth that eludes so many -
You cannot tell who is disabled and who is not just by looking at them.
Many disabilities are invisible. Not only that but many disabilities/abilities do not remain static. Maybe someone can walk some days and not others depending on their pain levels. Maybe they can only walk for short distances. Maybe they are autistic and some days their sensory issues or executive functioning skills are better than others. Maybe their depression kept them in bed the last 3 days but they just stopped at the grocery store on their way home from therapy.
The point is, there are countless types of disability and you can't know what their reality is like by seeing random moments out of their lives.
Now comes the ranty part of this post. Every time I see someone say something about all the 'disability fraud' or complaining about 'special treatment' it just makes them look like a gigantic tool. Now, I used to have the foolish idea that they simply didn't understand and if someone explained the reality to them that it would make a difference but, nope, they just double down. And if you examine the facts it all just boils down to pettiness.
"Must be nice to sit on your ass all day and get a check from the government. Wish I could do that."
I won't speak to Workman's Comp or disability insurance provided by employers as I know they vary and have had no experience with them. I don't know so I'm not going to pretend that I do for the sake of my argument. See how that works? What I do know a great deal about is SSI and SSDI. SSDI is based on what a person has paid into the Social Security system before they became disabled. The more they earned the bigger the check they receive. SSI is for those who were not able to work enough to pay into that system. As familiar as I am with the program I still won't apply a definitive amount because I know that sometimes the state of residence will add to it. I can say that for a disabled Vermont resident with NO other income, the amount is less than $800 a month. If you believe that surviving on $800 a month in an area where the average rent for a 1 bedroom apartment without any kind of subsidy is $600 is somehow 'living large' you may want to reconsider your career choices. In my case, I am married so it is drastically different. My husband works at Walmart so I get less than $100 a month. In case you missed the 'Walmart' part, yes, they consider Walmart wages to be 'high enough' that they cut my check that low. For a family of four.
Okay, let's assume that everyone is dying to live this high life so they decide to fake a disability. I had medical documentation for my disability going back to the age of 11. I also had a documented work history that went back 20 years and clearly showed that I could not function for more than 4-6 months at a time (at best). And when I say that, I don't mean that I just hopped from job to job. I mean I would work, crash for 18-24 months (sometimes involving hospitalizations), and then try all over again. It still took 18 months of paperwork, evaluations, and me hiring a lawyer to be approved. Every 3 years I have to go through a thorough evaluation to prove that I am still disabled.
Then there are the disability accommodations or, as these people love to refer to them, "special treatment". How dare those people with mobility issues get the good parking?! Yeah, I know, most of us can agree that the people with that attitude are tools but I have seen that mindset applied to all kinds of things that disabled people require to live their lives on anything close to equal terms. Don't believe me? Google 'pre peeled oranges' and watch the flaming asshattery unfold. And skipping lines at amusement parks or fan conventions? Sweet baby Jesus! How unfair is THAT?!
Lemme tell you a little story. Once upon a time I attended a fan convention with a disability pass. With it I was allowed to cut the line for my favorite actress. Did I prance merrily about with my 'magic pass' Skipping All The Lines Ever? No. I didn't skip any other guest lines because *drumroll* I was too disabled to access the con like everyone else even with the pass. What the folks throwing me the stinkeye (and the ones I saw bitching about it online for days afterward) didn't see was that I paid for my VIP pass just like they did. Only instead of frolicking about the con from open until closing all 3 days like them, I only managed about 6 hours in that building over the entire weekend. While they were hanging out with their friends I was saying,"I'm sorry guys but I have to leave." I met wonderful people and it was worth it for me but I was paying a price that others couldn't even see. If only folks could keep that in mind instead of promptly getting jealous that someone is getting something they are not.
I was going to write out a paragraph wrapping this up but I think I'm just going to repeat the previous line since it's really my whole point.If only folks could keep that in mind instead of promptly getting jealous that someone is getting something they are not.
Saturday, February 4, 2017
Friday, September 30, 2016
Autistic Superpowers
Spoiler: We're not all Rainman.
No, I'm talking about the traits we have that make us stand out from the crowd. Like our strong sense of justice. Many of us become disability activists because of this trait but it applies to all areas of our lives. This is often intertwined with our tendency toward black and white thinking which means we are the ones who will do what we believe is right regardless of any consequences for ourselves.
Most of the people I interact with online on a daily basis are not autistic and I am often fascinated by the 'go along to get along' mentality I see displayed. I'm not saying this to pick on anyone, as it seems to be a conditioned response to our society so I'm sure many aren't even consciously aware that they are doing it. The autistic mind looks at a situation and if it offends their sense of justice will say,"This is wrong. I simply can't go along with it.", and respond accordingly, whereas a non-autistic person appears to say,"This is wrong but if I don't go along with it other people may get upset or not like me anymore so I'll just stay quiet." (And not just appears - I have literally had people say things like that to me.) Another common thing I see is,"I see them being mean to other people but they've never done anything to me so they're good people." Whether it's a friend talking about a personal acquaintance or a random white person talking about the police I see this numerous times a day online. I can't even wrap my mind around that one.
We're told we lack 'social skills' and are pressured to play along but just because something is 'normal' doesn't make it right. Our society is being torn apart right now by fear and prejudice and hatred but those who stand up (or kneel) to speak out against it are mocked or outright vilified. I am often frustrated by the sense that bad behavior will always continue because there are not enough people speaking out. As long as there are no consequences there is no reason to change the status quo.
I appreciate my brain even when it makes me 'unpopular'. I sleep easy at night knowing that I am true to myself and my convictions and, honestly, it really doesn't bother me if people I wouldn't want to associate with anyway don't like me. Perhaps that should be added to the list of Autistic Superpowers, as well.
It's like Winston Churchill said,"You have enemies? Good. That means you've stood up for something in your life."
Thursday, August 25, 2016
Yet Another Problem With Disability Representation in Entertainment.
This isn't going to be about Hollywood blowing off disabled actors or reinforcing the inspiration/burden stereotypes. It's about something troubling I realized recently that has kind of crawled into my brain and refused to leave.
Last week I saw an independent film called The Happys and I very excitedly wrote this take on it - The Happys or Holy Crap! Someone Did It Right I was so thrilled to see a disabled character that not only could I relate to but that was written as a human being with strengths and weaknesses. What I did not expect was to discover that others interpreted the story line as unrealistic because it did not follow the usual stereotypes. Here I had hope that characters like this one could educate people about the realities of being disabled while entertaining but it appears to have missed the mark.
I spend a great deal of time reading articles about disability and am reminded daily about just how misunderstood it is to much of the population. This creates problems for us because a lot of the misinformation and misunderstanding leads to hostility toward the disabled community. For example, some wheelchair users are able to stand or walk for short distances. Not understanding this leads to charges of 'faking' and even angry attacks. It gets even more complicated when it comes to invisible disabilities.
I am autistic. I have an autistic child and dozens of autistic friends. We are all very different from one another. There are enough commonalities to establish a basis for diagnosis but we are still individuals with different abilities. How can film makers portray an autistic character 'realistically' to a society that believes we're all either non verbal 5 year old boys or 'Rainman'? "A person with x disability would not be able to do y." We can and we do. I loathe haircuts. I'm 44 years old and I literally sit there fighting the urge to scream. My 6 year old autistic child loves them. She would get a haircut every week if it could be possible.
Saying we're all different is stating the obvious but it still seems to escape the grasp of so many non-disabled folks. On one level it is understandable as it is outside of their realm of experience but at the same time it's troubling because it demonstrates that, at least subconsciously, we are not seen fully as human beings. This affects everything from how strangers treat us on the street to what accommodations businesses are willing to make for us. Maybe if over the next decade every disabled character was portrayed in a realistic manner the rest of the world would begin to get a more accurate picture, but I'm afraid that these rare gems we have now will continue to be misunderstood.
Last week I saw an independent film called The Happys and I very excitedly wrote this take on it - The Happys or Holy Crap! Someone Did It Right I was so thrilled to see a disabled character that not only could I relate to but that was written as a human being with strengths and weaknesses. What I did not expect was to discover that others interpreted the story line as unrealistic because it did not follow the usual stereotypes. Here I had hope that characters like this one could educate people about the realities of being disabled while entertaining but it appears to have missed the mark.
I spend a great deal of time reading articles about disability and am reminded daily about just how misunderstood it is to much of the population. This creates problems for us because a lot of the misinformation and misunderstanding leads to hostility toward the disabled community. For example, some wheelchair users are able to stand or walk for short distances. Not understanding this leads to charges of 'faking' and even angry attacks. It gets even more complicated when it comes to invisible disabilities.
I am autistic. I have an autistic child and dozens of autistic friends. We are all very different from one another. There are enough commonalities to establish a basis for diagnosis but we are still individuals with different abilities. How can film makers portray an autistic character 'realistically' to a society that believes we're all either non verbal 5 year old boys or 'Rainman'? "A person with x disability would not be able to do y." We can and we do. I loathe haircuts. I'm 44 years old and I literally sit there fighting the urge to scream. My 6 year old autistic child loves them. She would get a haircut every week if it could be possible.
Saying we're all different is stating the obvious but it still seems to escape the grasp of so many non-disabled folks. On one level it is understandable as it is outside of their realm of experience but at the same time it's troubling because it demonstrates that, at least subconsciously, we are not seen fully as human beings. This affects everything from how strangers treat us on the street to what accommodations businesses are willing to make for us. Maybe if over the next decade every disabled character was portrayed in a realistic manner the rest of the world would begin to get a more accurate picture, but I'm afraid that these rare gems we have now will continue to be misunderstood.
Monday, August 15, 2016
The Happys or Holy Crap! Someone Did It Right!
I want to begin by saying that I have turned the subject over and over in my head and can't find a way to write about this without any spoilers. I will keep plot points as vague as I can while still getting my point across but if you haven't watched it yet and want to avoid anything being spoiled, you should probably skip this post.
*image description - movie poster for The Happys featuring 3 women and 3 men standing in a line.
The plot from their IMDB page - "Twenty-one year old Tracy walks in on her boyfriend Mark having sex with a man and decides to leave him. After assessing her limited options, she returns to Mark with a deal-if he agrees to marry her, she'll forget the incident ever happened. Mark accepts her terms, but neither fully understands the sacrifices they have to make. As their relationship deteriorates, Tracy's world opens up when she befriends the quirky residents in her Los Feliz neighborhood: Sebastian, a troubled recluse who closed the door to society after being bitten by a poisonous spider; Luann, a former child star and true free spirit; Krista, Mark's hard-charging talent manager; Jonathan, a gay magazine reporter; and Ricky, a hot Mexican with a failing food truck. As Tracy discovers her sense of self and true passion for cooking, she is a catalyst that forces them all to grow and connect in unforeseen ways."
I first became familiar with this indie film project because I am a fan of Melissa McBride. I was eager to help with fundraising for that reason alone but when I saw that it was also an LGBT ("Hey! That's me!) film I was even more excited. The project was completed and premiered at the Rhode Island International Film Festival where I was able to see it.
I think it's a fantastic film for many reasons but this isn't going to be that kind of review. It's the character Sebastian and the handling of his 'reclusive' personality that took me by surprise and became the most important to my mind. His story line centers largely around his social disabilities (although just how 'disabled' he is is open for debate depending on whether you subscribe to the social model of disability or the medical model - but that would be a different post entirely).
Without going into great detail and spoiling too much, there came a point in the story where it looked like he was going to be The Disabled Person Who Overcame and Did the Thing. My heart sank. I had been enjoying the film so much and I was afraid it was about to be ruined for me. But it wasn't. He didn't end up Doing the Thing. You know what I'm talking about, right? The soundtrack swells, little Johnny is suddenly able to walk and there's not a dry eye in the house.
*hurk*
We hate that and I am so grateful that it didn't take that predictable turn. We refer to that kind of stuff as 'inspiration porn'. And by 'we' I mean us actually disabled people who work hard trying to dispel this common trope that we exist to be objects of inspiration for the non-disabled if we are to be valued at all. It's not just a matter of it being a little annoying. It is dangerous for us to continue to be seen as objects or less than human. Every year on March 1st we have a Disability Day of Mourning for all those murdered by their caregivers. Most people aren't aware of this. Just a couple of weeks ago Japan had its worst mass killing in decades. 19 stabbed to death and another 25 injured. Where was the trending hashtag? There was none because the victims were all disabled. 'Inspirations' or 'burdens', society rarely sees us as fully human. I want to thank these amazing filmmakers for making Sebastian fully human. The average viewer probably wouldn't even consciously notice but it still matters.
But this is even more personal for me than what I have already discussed. At the time the fundraising campaign was going on I was Sebastian. I had recently become unable to leave my house and the depression that frequently accompanies my losing functioning skills (I'm autistic so losing the ability to function comes with the territory for me) was threatening to take hold so I threw myself into helping with this project as a desperate attempt to make myself feel better. It worked like a charm. I would like to thank these amazing filmmakers for that, too.
For those who know me, my being in a place where I was able to make that trip to see the film could appear to be The Disabled Person Overcoming and Doing the Thing but it's not. There are probably military operations going on around the world right now that required less careful planning than what this trip required for me. It shouldn't be 'inspiring' to do the things that non disabled people take for granted. It just takes us a little more work. I'm still very much autistic. Bottom line is, some days we can Do the Thing and some days we can't. Sebastian couldn't Do the Thing but it didn't detract from his value as a human being. Thank you guys for getting it right.
The plot from their IMDB page - "Twenty-one year old Tracy walks in on her boyfriend Mark having sex with a man and decides to leave him. After assessing her limited options, she returns to Mark with a deal-if he agrees to marry her, she'll forget the incident ever happened. Mark accepts her terms, but neither fully understands the sacrifices they have to make. As their relationship deteriorates, Tracy's world opens up when she befriends the quirky residents in her Los Feliz neighborhood: Sebastian, a troubled recluse who closed the door to society after being bitten by a poisonous spider; Luann, a former child star and true free spirit; Krista, Mark's hard-charging talent manager; Jonathan, a gay magazine reporter; and Ricky, a hot Mexican with a failing food truck. As Tracy discovers her sense of self and true passion for cooking, she is a catalyst that forces them all to grow and connect in unforeseen ways."
I first became familiar with this indie film project because I am a fan of Melissa McBride. I was eager to help with fundraising for that reason alone but when I saw that it was also an LGBT ("Hey! That's me!) film I was even more excited. The project was completed and premiered at the Rhode Island International Film Festival where I was able to see it.
I think it's a fantastic film for many reasons but this isn't going to be that kind of review. It's the character Sebastian and the handling of his 'reclusive' personality that took me by surprise and became the most important to my mind. His story line centers largely around his social disabilities (although just how 'disabled' he is is open for debate depending on whether you subscribe to the social model of disability or the medical model - but that would be a different post entirely).
Without going into great detail and spoiling too much, there came a point in the story where it looked like he was going to be The Disabled Person Who Overcame and Did the Thing. My heart sank. I had been enjoying the film so much and I was afraid it was about to be ruined for me. But it wasn't. He didn't end up Doing the Thing. You know what I'm talking about, right? The soundtrack swells, little Johnny is suddenly able to walk and there's not a dry eye in the house.
*hurk*
We hate that and I am so grateful that it didn't take that predictable turn. We refer to that kind of stuff as 'inspiration porn'. And by 'we' I mean us actually disabled people who work hard trying to dispel this common trope that we exist to be objects of inspiration for the non-disabled if we are to be valued at all. It's not just a matter of it being a little annoying. It is dangerous for us to continue to be seen as objects or less than human. Every year on March 1st we have a Disability Day of Mourning for all those murdered by their caregivers. Most people aren't aware of this. Just a couple of weeks ago Japan had its worst mass killing in decades. 19 stabbed to death and another 25 injured. Where was the trending hashtag? There was none because the victims were all disabled. 'Inspirations' or 'burdens', society rarely sees us as fully human. I want to thank these amazing filmmakers for making Sebastian fully human. The average viewer probably wouldn't even consciously notice but it still matters.
But this is even more personal for me than what I have already discussed. At the time the fundraising campaign was going on I was Sebastian. I had recently become unable to leave my house and the depression that frequently accompanies my losing functioning skills (I'm autistic so losing the ability to function comes with the territory for me) was threatening to take hold so I threw myself into helping with this project as a desperate attempt to make myself feel better. It worked like a charm. I would like to thank these amazing filmmakers for that, too.
For those who know me, my being in a place where I was able to make that trip to see the film could appear to be The Disabled Person Overcoming and Doing the Thing but it's not. There are probably military operations going on around the world right now that required less careful planning than what this trip required for me. It shouldn't be 'inspiring' to do the things that non disabled people take for granted. It just takes us a little more work. I'm still very much autistic. Bottom line is, some days we can Do the Thing and some days we can't. Sebastian couldn't Do the Thing but it didn't detract from his value as a human being. Thank you guys for getting it right.
Monday, June 6, 2016
Milestones
Well, I did it. Yesterday was my birthday and I turned 44. Most people see 30, 40, or 50 as the big milestone birthdays but, for me, 44 is it.
I jokingly told my husband yesterday morning,"Okay, I made it. I can die now."
No, I don't plan on dying soon but I have now officially outlived my mother. She was 43 when she committed suicide and that's been looming over me (with the help of several craptastic 'professionals' over the years) for a long time.
She's been gone for almost 28 years now and I still don't know if she was consciously trying to kill me. I knew she didn't want me and she came right out and said she would have wanted to abort me if she'd known she was carrying a girl but did she really want to see me die? The only time she ever showed concern for my depression and suicide attempts was when there was someone, usually a therapist or caseworker, whom she wanted to play the 'good mother' for. One thing is for sure, she loved the attention it got her. Poor Barbara With The Crazy Daughter. How haaaaard it was for her. I was 13 before someone had the balls to call her out on her part in it all.
Her last words to me on the day she died was to call me a 'slut', repeatedly. She just found out that I had been raped the week before (or 'seduced that poor man', as the oh-so-fucking-predictable narrative goes) and had to come right over to see if she could break me the way she always used to be able to. But I wasn't nine years old anymore. Or twelve. I was 16 and had learned that when people enjoy hurting you the best defense was to not give them what they want. I kept my cool and calmly headed out the door for my therapy appointment. By the time I arrived he said she had already called him and told him what she had done. He wouldn't tell me what he said to her but he warned me that she was going to 'pull something dramatic' to try to win over everyone's sympathy because she knew she had gone too far.
Take a bottle of pills, drive straight to the hospital, and everyone will feel so sorry for her that they'll forget what a shit human being she is. That game probably would have worked on most of the family, too, except for a medical condition that caused the drug to hit her system faster than expected. There are some that believe that she killed herself because she was 'depressed' but I saw her that day. She was just an evil woman trying to hurt people and couldn't handle getting called out on it. I think she started out that day believing I would be the one to try and kill myself.
But she's gone and I'm still here. I made it.
Tuesday, May 24, 2016
Life Isn't All Rainbows and Sunshine
*image description - Pink background with the words 'Don't compare your life to others. You have no idea what they have been through. - Sam Cawthorn'
I've been giving a lot of thought to authenticity online lately and my eldest daughter said something today that really struck me. She told me about an article she had read that talked about social media making people feel depressed because their lives didn't resemble the shiny, happy stories they were seeing their friends post. This made me think about my propensity for keeping my posts/tweets on the light side and how that doesn't give the full impression of my life. The thought that someone could compare their life to mine and feel that theirs falls short somehow kinda makes me giggle a little.
The thing is, my life is not just all about me. I will happily discuss my anxiety, sensory issues, and problems with social situations but they are my story. I have a husband and 3 kids who do not necessarily want or need me to share with the world what may be going on inside our walls.
This is especially the case with Evie. There are a gazillion blogs out there where parents complain about how hard their lives are because their kids are autistic. This has created the ableist impression that disabled children are burdens and the parents must magically be saints for loving them. I do not ever want to contribute to that nonsense because that's what it is. I much prefer to post cute or amusing anecdotes that illustrate what an incredible kid she is. We do go through rough patches but I don't talk about them publicly. Not because I want to give people the impression that our life is some 60's sitcom kind of perfect but because she deserves to not have her difficulties broadcast to the world.
The other piece of it is just basic therapy for me. Sometimes the only way I can make it through the day is by finding some grain of positive in the middle of a whole bunch of yuck and focusing on it with all my might. I'm really not a Pollyanna (although I recognize that I may come across that way at times) but I just can't see the point in wallowing when I know that counting my blessings will help elevate my mood. I can't do it all of the time, and sometimes it's much easier than at other times, but I try.
While I'm sure that some people are putting on a false front for the sake of misleading people into thinking their lives are better than they really are, I know that many of us are being genuine. We're just not posting everything that happens in our lives.
I mean, seriously. Do any of you really need to know that for some reason the big toe on my right foot is suddenly sprouting a full head of hair? WTF is up with that even?
Sunday, May 15, 2016
It Seems I Social Media Wrong
Like many (if not most) autistics, I suck at the superficial. Small talk is difficult and I much prefer meaningful conversation. For perhaps the 542,370 time I have had a friend point out that sharing too much online can bring on badness. I know this intellectually but it doesn't seem to have an effect on my approach to online socialization.
I am Heart-on-my-sleeve This-is-what-I'm-thinking Gal and no matter how many times it comes back to bite me in the ass I just can't manage to be any other way. Oh, I'm sure I could with some discipline. I could start posting nothing but quick snapshots of popular interests but that's just not me. If I am going to interact with other people it strikes me as pointless if there's no actual connection.
I don't expect the world to care about what I'm thinking or feeling at that moment or what amusing thing my kid just said or what my favorite song is that day but it's all me. Not everyone will like me and that's totally cool. I don't like everyone and would expect no different. So while I may be doling out ammunition for the less pleasant types to use against me, it allows everyone to see who I am and decide whether I'm someone they want to get to know. I have made some amazing friends online (plus landed me a wonderful husband in the process) so the good has far outweighed the bad.
For me offering up a sanitized image of myself to avoid potential badness from others online would be like never wearing anything considered 'too revealing' to avoid possibly being raped. I'm doing nothing wrong by being myself and it shouldn't be my responsibility to prevent the bad behavior of others. If they want to behave badly they will do so regardless of what I choose to post.
So I will keep on keeping on. Those who like people like me can find me and stick around and those who don't can know to pass me by.
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