Wednesday, September 27, 2017

When disability doesn't come with pride

(Mention of suicidal ideation)
If you’ve followed news regarding disability, you’ve probably heard of “inspiration porn”—the well-meaning but uninformed way that some disabled peoples’ stories are called inspirational. At times this can trivialize problems and build unrealistic expectations. For example, Rain Man led many to believe that autistic people are math savants. This concept is pretty mainstream, but there is another aspect I've thought about. This is something other disabled people can unfortunately play into.

I live with Nonverbal Learning Disability (NLD). It’s part of the autism spectrum. In the disability community—both online and in person—there can be a sense that you’re never allowed to be sad about being disabled. That it would be disloyal to other disabled people if you ever wish you were able-bodied or neurotypical. That you’re betraying the cause if you sometimes long for options you could have had. I can’t help but feel that this mirrors non-disabled people who believe we’re depressing unless we’re positive about our disabilities all the time.

Back in January, I got an article published on The Mighty about living with NLD. It gathered a lot of “likes” and shares. I got numerous messages from people I’d never met, telling me they’re inspired by how positive I am about my disability and that I’d be a good role model for their kids. This was incredibly encouraging and I really am thankful to everyone who reached out. At the same time, though, there’s an expectation I can’t always meet.

I wrote that article on an optimistic day. Sometimes I feel that way. I really do want to be helpful. I can’t strive to be a role model, though. Even if I give some good advice, there are aspects of my life you probably wouldn’t want to replicate.

I make $10 an hour, so I'm financially dependent on my husband (please don’t tell me I’m “lucky to have him take care of me.” I love him a lot and am grateful, but that hurts to hear). I never finished college because a full workload was so overwhelming. I’m planning to go back, although a degree may take a long time. I basically can’t go anywhere on my own that isn’t a short walking distance, because bus routes are so confusing. I have no sense of space orientation or direction. I can’t form an internal map. This has cost me a lot of job opportunities. I’ve gotten lost in department stores. When crossing a street with Mike, he holds his arm out in front of me because I’ve so often walked into traffic.

This can lead to intense isolation and hopelessness. I actually spent a year and a half suicidal, which cleared up after I got my current job. Back when I worked at Stepping Stones, I fantasized about jumping in front of the train every day. I once ran across an article about the most common OTC medications to overdose on, and bookmarked it in case I’d ever want to know. Even close friends were unaware this was on my mind.

I’d written my NLD article in the beginning of that year (two years before it was published). I wrote that essay in a positive state, and then wanted to die for more than a year afterwards. This doesn’t mean I don’t have good days. I don’t want to get lost in self-pity or bum people out. It just means the essay doesn’t reflect a constant mood. If that makes me uninspiring, I guess I can accept that.

There are friends who have told me, “You’re not disabled. You’re talented. You can do anything.” That comes from a place of goodwill, but it’s not accurate. I am disabled and comfortable being described as that. I can do some things, but not everything—disability involves limitations. I’m disabled and talented, which isn’t a contradiction.

Sometimes I’m more concerned, though, with other disabled people who believe it’s an act of betrayal to not “celebrate” and “embrace” our disabilities all the time. I understand where this comes from. If I say “sometimes my limitations make me depressed,” others could interpret it as “you’re saying I should be depressed about my disability, too.” This isn’t what I’m saying. While it’s important for us to be able to accept ourselves/each other as we are, it’s okay to sometimes not feel proud and happy. In navigating our way through these challenges, we need the space to be honest about how we feel.

Tuesday, August 22, 2017

The dog walker

Today Mike and I were at Stop & Shop, where we ran into a neighbor from the old apartment building we’d moved out of last October. He informed us that one of our neighbors from that building had died. I didn’t know her very well, but the news was especially disturbing because of the circumstances.

T resided few doors down from us, on the other side of the hallway. She was a middle-aged woman who lived with her boyfriend and was often seen walking her dogs. She would shuffle down the sidewalk in a long leather jacket, dyed red hair pulled back in a ponytail, clutching several dog leashes in one hand and a cigarette in the other. She’d hack and cough, looking lost in thought while she walked. When I said hi, she’d return the greeting with her eyes downcast. I think she was embarrassed because we knew what was going on at home. Everyone in the apartment complex knew.

Shortly after Mike and I moved to Bridgeport in September 2013, he heard a crash from behind her doorway. He thought T had fallen down. Then she shouted, “He’s choking me! Call 911!” So he did. The cops showed up for a domestic dispute. I was afraid her boyfriend would come after us if he knew Mike had called, but he didn't. Afterwards, T apologized to Mike. She said, “I’m sorry for being white trash.”

This was the first of many times. Some nights she’d scream, “Help me!” Sometimes she would stand outside her apartment door, pounding on it, shouting at her boyfriend to let her in. Other times her boyfriend was outside that same door, hollering at her to let him back inside. He’d go away for a while but was always back. They were both drunk a lot of the time. Occasionally Mike and I overheard fragments of arguments when we passed by their door. We weren’t trying to listen; it was just so loud. Once we were passing and randomly heard, “Because fuck you, that’s why!” Another time we heard her boyfriend say, “You’re a cunt.” And on another day she bellowed at him, “Just hit me, you pussy! Just punch me in the fucking face!” I couldn’t understand why she told him to punch her.

This would sometimes happen at 1 a.m. Then, locked out of her apartment, she’d bang on the door and start shouting. I’d come out to see if she needed help. She’d profusely apologize to me, and then go back to pummeling the door.

We called 911 so many times because we didn’t know what else to do. Her neighbor in the next apartment was a woman in her eighties. She told me, “I hear this all night long. I’ve had a heart attack because I was so scared. I had to go to the hospital.” She said that T and her boyfriend had been living there for years.

One night in late 2014, soon after my car accident, T came knocking on our door. She was slurring and stumbling. She wanted us to call 911 because her boyfriend had locked her out again and had threatened her. Mike asked, “Does he have any weapons?” She answered, “Just his fists.”

I had answered the door in my wheelchair, the one I was in for two weeks after breaking both feet in the crash. She asked what happened to my leg. I told her about the car accident and she let out a low whistle. “You are incredible,” she said.

I figured T said that because she was drunk. She barely knew me; I didn’t know why she called me incredible. But I always remembered T’s low raspy voice, offering a vote of confidence.

At some point during that visit, she also mentioned that she had cancer. A few days later, she came to our apartment with an armload of clothes to give away. She asked if I would take them, and I said sure. I thanked her. We didn’t end up keeping the clothes, but there was a cool red leather jacket in there. It was marked with a few cigarette burns and didn’t fit. Later, Mike and I both realized she might have been clearing out her possessions and didn’t know many people to give them to.

Sometimes when Mike or I called 911, her boyfriend got arrested. Other times they both did. But even when that happened, neither of them got angry with us. They thanked us for intervening.

The manager at the 7/11 knew who she was. He mentioned her once, saying that he watches me cross the street to make sure I’m safe. He said that T had recently gotten into an accident while drinking. Everyone in the neighborhood seemed to know who she was, and about the domestic abuse and alcoholism. She was a person they would mention while shaking their head as if to say it was sad, but they didn’t want to get too involved.

When we saw our old neighbor at the grocery store today, he told us that T’s boyfriend had finally left. She had been living on her own a few months and then, one day in April, people started to notice a smell in the hallway. He called maintenance, wondering if it was a sewage problem. They discovered she had been dead for three days. Her dogs were sitting next to her body. All three of the dogs have now found new homes. He said it was lucky they didn’t feed on her; otherwise they would have needed to be euthanized.

I went to her Facebook page tonight, which I had never seen before. I learned she had been a bartender in the area before she developed cancer and had to go on disability. I learned that at one point, she’d gone to the same cosmetology school as me. She was 51 years old. This was surprising; she had always appeared older.

T had tried to start a fundraiser two years ago. The description said she and her dog both had cancer and she was trying to raise money for her dog’s vet bills. T had part of her tongue removed. She explained that the surgeons had to cut into her jawbone to remove a tumor, leaving her with 200 stitches. She said she hated looking in the mirror every day, but wanted to beat the cancer and couldn’t do it alone. She wrote that she was afraid of losing her home if her disability check didn’t cover rent. One of her other dogs had been taken away, a dog she had bottle fed as a newborn. She didn’t want to lose the one with cancer. The goal was to raise $2,500, but she only ended up raising $70. I wished I had known about it and could have donated.

Comments people wrote on her page were often along the lines of, “I hope you’re feeling and doing better.” Her last status update was from February 28. It said, “Please call.”

T also posted thoughts on Facebook addressed to her deceased niece. She told her niece that she missed her, but thanked her for having a daughter. She said that even though it was a painful loss, it was a blessing that she’d left a child behind. T was excited to watch the baby grow up.

I’m sad she died alone in that apartment, and that it took days before anyone knew. I’m sad her dogs spent three days with her body. And it's awful that she struggled so terribly in the years beforehand. T seemed like a nice person, just one with so many problems that nobody knew how to help.

Strangely, I’d dreamed about her a few days ago. I dreamed I was in Stop & Shop and passed her in one of the aisles. She was walking her dogs through the store. I said hi but she shuffled away, looking down at the floor. Like she was embarrassed I’d seen her.

The grocery store in the dream was the same one I was in today, when we heard the news of her death.

It’s hard to share a story about the death of someone you only knew in passing. People will inevitably say, “I’m sorry for your loss.” It wasn’t my loss, though. It can feel odd to grieve someone I barely knew; almost as if I don’t have a right to that grief. I never had an extended conversation with her. I didn’t know her favorite music or movies, her opinions about life, or what she liked to do for fun. At the same time, I knew some of the most intimate details of her life.

It's not my loss to be sorry about. It's hers.

Monday, July 31, 2017

Three Ways to Be Naked

When I was six years old
I was so afraid of skeletons
that I wished I didn’t have one.
Living with death as the foundation of your body
is like
Sharing a fleshy home
with your mortality as a roommate.
Ten years later, I was a goth kid
wearing the skeletons in my closet.

Sometimes bones are too bare to bear.
I tell women,
“If some guy annoys you by asking for nudes,
tell him,
‘I’ve got something better. These are next level nudes.’
And then send him your X-Rays.”

I think stripping is the opposite of therapy.
Instead of laying out your insecurities as laundry to be ironed,
Dancers disrobe to put on
an invincible, cybernetic self
with a glitter aura,
Slick with Teflon-coated sweat.

In therapy, you pay someone else
to watch you undress.
Calling an analyst a “shrink”
is saying we’re diminished by therapy
When it’s more like dancing under a microscope.

People look at others
with the eyes of a hungry surgeon
and see themselves
through Photoshopped funhouse mirrors.

Instagramming our meals is just a next-level selfie.
A selfie is, “Look at my face.”
A food picture is, “…and look what goes into my face!”
We consume ourselves and each other
Jumping bones
Finding bones to pick
Picking bones clean.
We make fun of selfies, but
Every great work of art throughout history
has essentially been a selfie,
Creators calling out, “I am here!”
Graffiti tagging the walls of time.

It turns out
The emperor has never had clothes.
But he’s always had a damn good Snapchat filter.

Monday, July 17, 2017

Why does night feel supernatural?

The world feels supernatural at night, because nighttime opens up more possibilities for imagination. I think this is for three reasons.

You might be thinking less about work or daily practicalities. There’s more time for introspection. Even if you’re not tired, you’re also slipping more into a dreamlike state which allows for abstraction.

Another reason is that shadowy spaces naturally spark our imagination. Sometimes it’s in a fearful way, but fears can be creative.

Also, it’s because we can see the stars. This always feels like magic. Preexisting formations make us want to create; outer space absorbed into inner space. The galaxy reminds us of the seemingly endless expanse we can begin, bit by bit, to fill with ideas. 

Monday, June 26, 2017

Well-behaved doggos rarely make history.

This was Slinky, 1995-2010. She was the worst-behaved dog I ever had the pleasure to know.

In this photo, she’d been outside and had gotten her dog bed all wet from the rain. So, ever the problem solver, she stuffed herself into the cat bed to get that one soggy instead. She was sneaky, but not especially clever. One time somebody put a Milk Bone on her head. She just sat there, looking increasingly confused, until it fell off.

Slinky’s eyes looked like she was wearing smeared makeup reminiscent of Alice Cooper. Her ears were so long she used to trip over them as a puppy. Her first owner used to put them up on her head in a scrunchie.

My dad had explained our pets by saying, “Freckles is a good dog, but Slinky is a funny dog.” This was accurate. She must have been the inspiration behind the phrase, “And on that day, not a solitary fuck was given.”

This dog wouldn’t beg for treats or attention. She would demand it. Whenever somebody new came to visit, she’d “bork” at them incessantly, roll over, and frantically move her tiny legs in a “pet me” motion. Her immediate assumption was, “Well, you’re here for ME.”

Slinky didn't fear other animals, but was afraid of balloons because of the popping sound. She was even wary of bubblegum because of the balloon resemblance. She used to knock over the trash can and spread it all over the floor in a greasy, reeking treasure trail that looked like her art project. My brother once filled the garbage can with balloons to discourage this (and it worked).

Slinky was never picky about food. If somebody made chicken and then dumped the grease outside, she’d run out and start licking the grease off the leaves.

She devoured bags of chocolate and candy, but somehow never got sick. Our other dog, Freckles, was the tattletale. Freckles woke me up one morning because she urgently wanted to show me something. She led me up the stairs, stopping to check if I was following. She brought me to an ajar door and started scratching. Inside, Slinky was consuming Halloween candy with the fervor of someone binge-watching a Netflix show.

There are plenty of other “bad Slinky” stories, but these are the ones that immediately come to mind. Slinky, you were completely comfortable in the wrinkly Basset Hound skin that made you look like a melted candle. And whenever I hear PTAF’s song “Boss Ass Bitch,” I think of you.

Saturday, June 24, 2017

Reaching new Hawthorne Heights

I went to Emo Night at Orange Ale House yesterday and fucking loved it.

I didn't consider myself an "emo kid" in the genre's heyday. I used to make fun of it, and pop punk, while rationalizing that the music I liked wasn't actually in that category. It was part of the whole "I'm into metal and emo is just flimsy tin foil" mentality. In hindsight, it was so silly to be elitist about. I love a variety of music, but there are three appeals of emo and pop punk (for me): the nostalgia, the surrounding community that bonds over it, and the fact that the lyrics are melodramatically angsty but the songs are upbeat and energetic.

I was happy to see the variety of ages. There were people in their thirties who remembered Good Charlotte and Death Cab for Cutie. There were the 22-year-olds screaming along to Paramore. There was music I remember from eighth grade. It spanned from the early to late 2000s. Some people dressed up. Others were people who used to wear fishnet shirts and Chuck Taylors, but still love the scene even if they don't sport the style anymore. It's more about the music and social bonds than the clothes. We came of age in the time when scene first reared its shaggy bleached head, and you had to drape your hair over one eye because the world was too sad to look at with both.

I saw so many people I knew. We were all bouncing in a continuous wave while skeletons and mummies danced over the projection screen. People wore glow necklaces as halos. We passed around a microphone and yelled into it together. Those unfamiliar with this subculture might think it's confusing how the lyrics "I can fall asleep tonight or die, because you kill me" could be sung with such joy.

Experiences like that are unique because you're in a crowded space with everyone talking, but you know what they're all saying. You're speaking the same words, but the lyrics mean something different to everyone. "There's a story at the bottom of this bottle" could remind someone of booze-fueled open mic nights, while reminding somebody else of soda bottles they stored money in as a child. Everyone has their own story at the bottom of a different bottle, and all of these bottles are floating in one wave, mixing their contents.

At some point during the night, a guy tried to pick me up by saying, "You look sad. What's the matter?" I bet that's his designated line to use at emo night. My sister told me, "That's not negging; it's therapisting."

One time the music stopped and a host yelled, "Here's something to dry these emo tears!" and then showered us with streamers and Silly String.

When I went into the room with all the music, Mike worried I'd been swallowed by the crowd. Then he saw that I loved it. Any night that ends with me jumping up and down and covered in Silly String is a good one.

Friday, April 21, 2017

When someone presses the "dislike" button

Lessons that, for most of us, can be very hard to swallow:

-The fact that a person dislikes you doesn’t always mean they don’t know you well enough.
-The fact that someone dislikes you doesn’t automatically mean they are an asshole. It also doesn’t mean that you’re an asshole.
-It’s okay to not be fond of somebody who likes you. The same goes for vice versa.

On the first point: We all want to believe that everybody would like us if they knew us better, and that any person’s aversion is based on misinformation. Unfortunately, this isn’t true. If a person looks at me and doesn’t like what they see, it doesn’t necessarily mean their lenses need a new prescription. They could be seeing real flaws that are deal breakers for them. They could be seeing personality traits that are objectively neither good nor bad, but are simply not compatible with themselves. They could be seeing qualities that remind them of bad memories or sometimes their own insecurities. I’m not for everyone, and neither are you. This is all right. It’s not okay for somebody to be nasty and hostile, but we’re all allowed our own feelings. If I do have a flaw that is consistently pointed out, then it’s my responsibility to work on it. However, I shouldn’t do it with the end goal of winning any specific person’s friendship. It also doesn’t help to bury oneself in shame. That can actually stop us from making improvements.

Regarding the second point: Sometimes a person will dislike you for a terrible reason. They may be bigoted or prejudiced. They may have a prior commitment to animosity because of malicious intentions, and that does reflect badly on their character. They might just feel unfavorable toward most people. But, in other circumstances, there could be valid reasons for an aversion. The most common reactions seem to be to vilify the person who doesn’t like you, or to internalize it and decide there must be something wrong with you. As I said, it doesn’t have to mean any personal failing for either party. It could just be incompatibility.

As for the third point: Although we’re much more apt to like people who appreciate us, the fact that someone is fond of you doesn’t mean you’re obligated to return that feeling. That doesn’t mean it’s justifiable to be a jerk, but you’re not an unkind person for not wanting to hang out with them or be close. Likewise, it’s not weird or pathetic to like somebody who doesn’t seem interested in you. In that case, it helps to not internalize their disinterest (although that’s easier said than done), and it’s important to respect their boundaries and not push a relationship.

There are complex reasons for why some people click with each other and others don’t, and it doesn’t always reflect on character. It’s easy to get hung up on the people who don’t like us, even if we get along well with most people. The helpful thing is to do the best we can, and find those who both understand and enjoy us. There are plenty who will.