Tag: disability

bookmark_borderA week with too many things going wrong

Posted on by Marissa

During the past week or so, too many things have been going wrong. Too many mistakes, fails, mishaps, fiascos. None of the things are particularly serious in themselves, but combined, they feel like an avalanche, a cascade, a tidal wave of badness.

It started with a UPS fiasco. I bought a retired American Girl doll named Caroline from an Amazon seller, but the UPS driver could not find my house. I received an email prompting me to go to the UPS website to either confirm or correct my address, and I confirmed that I had entered my address correctly. The same exact thing, however, happened again the following day. I emailed UPS to give them directions to my house, but the same thing happened yet again! So I called them (something that is very difficult for me due to my shyness). The driver was finally able to find my house, but not until I had already left for work (I work afternoons / evenings). This would be fine, except for the fact that a signature was required for the delivery. So UPS informed me that they were sending my package to a convenience store that doubles as a UPS access point. I figured, therefore, that I would be able pick up my package up the next day before work, but it didn’t actually get to the convenience store until late afternoon. So I had to wait until the day after that. On that day, as I was about to leave for the convenience store, my mom texted, much earlier than I was anticipating, to let me know that she was ready to meet for lunch before work. So I had to wait another day. Finally, I made it to the convenience store and excitedly told the cashier I was there to pick up a UPS package. She asked for my ID, which, to my dismay, I realized I did not have. (I had brought my credit card, debit card, and subway pass, just in case I might need them, but it didn’t occur to me to bring my license.) Because an ID was required to pick up my package, I returned home empty-handed, having made the 40-minute round trip walk for nothing.

(Wow, that paragraph turned out to be really long!)

The fiascos continued from that point, with the following being a few examples:

  • When I went to Starbucks before work, they got my drink wrong, giving me a smaller size than what I had paid for. I brought it back (difficult for me due to my shyness) and they got it wrong again!
  • My neighbor called me, texted me, and then began banging on my door all while I was in the middle of a therapy appointment via zoom. I was having tree work done in my yard, and feared that something seriously bad had happened, such as a tree falling on my neighbor’s house and destroying it. I didn’t know whether to continue with the therapy appointment or to tell my therapist that an emergency was happening and that I had to go. I opted for the first option, but was so distracted that I wasn’t able to absorb anything my therapist was saying. It turned out that my neighbor’s issue was not urgent or time-sensitive at all.
  • I was asked to work an overnight shift, and my parents and I made plans to have dinner at a nearby restaurant before work, something that I really enjoy but don’t often get to do because I usually work at dinnertime. I packed a bag of the things that I would need for work and put it in the trunk of my mom’s car. Before dinner, I worked out on my parents’ exercise bike (which I use sometimes because I don’t own one myself). We got into my dad’s car, drove to the restaurant, and parked outside it. I opened the trunk and was appalled to find no bag inside. Neither my parents nor I put two and two together to realize that because the car that was used to drive from my house to my parents’ house was a different car than the one used to drive from my parents’ house to the restaurant, I would need to move my bag from one trunk to the other. I ended up in tears and feeling so sick that I was unable to eat anything, and my dad ended up having to drive back to the house to get the bag.
  • At work, I was assigned a block of time to collect shopping carts in the parking lot, but I didn’t, because I didn’t know I was supposed to do that during that block of time. (I really enjoy collecting shopping carts too; I just completely forgot that I was supposed to do it.)
  • I decided to walk around the pond near my house and take photos of the pretty trees, because the white and pink flowers were beginning to bloom and looked really beautiful. When I reached the beautiful trees, I took my camera out of my purse, turned it on, composed the shot, and pushed the shutter button. Nothing happened. I pressed the shutter again and again, but no matter how hard I tried, my camera was unable to take photos.
  • An extremely embarrassing incident happened at work, in which I got one customer confused with another and said something to him that made absolutely no sense, because I thought he was the other customer.

None of these things are the end of the world, exactly, but with so many of them happening within a relatively short amount of time, I am stressed, angry with myself, and filled with self-doubt. My life has been filled recently with one setback after another, and I haven’t been able to fully recover from each setback before the next one happens. I keep getting knocked off-balance, and there is no time to re-stabilize before I am knocked off balance again.

Some of these fiascos are just bad luck (e.g. Starbucks, my neighbor, my camera), while others (not bringing my license, failing to ensure that my bag was in the correct trunk, mixing up my work schedule, mixing up two customers) are arguably my fault.

The fact that I am on the autism spectrum relates to this string of fiascos in two ways: first because my brain is more likely to fail at certain types of tasks, and also because I tend to become more upset than the average person when a relatively minor fiasco happens.

I have a very high IQ, and my brain can do many things that the average person’s can’t. But I also have a disability, namely autism. Although I excel at math, reading comprehension, memorizing facts, and understanding complicated logical concepts, I struggle with things that most people consider to be “common sense.” I tend to forget / misplace / lose track of things; I tend to do badly with social interaction, which includes recognizing and remembering people; I tend in general to fail at things that others find simple.

I also tend to become completely unglued when an unexpected problem occurs.

As I exited the convenience store and walked, dazed, through the parking lot, I was overwhelmed with anger and frustration (at myself, not at the cashier, because the ID requirement logically makes sense). I could feel heat rushing through my body. It felt like the world was spinning around me and I was lost at sea without a paddle, buffeted about by the waves. Even though I knew logically that nothing disastrous had happened – there was nothing time-sensitive within the package, and I could go back and pick it up the following day – I was overwhelmed with emotional upset.

Similarly, the moment I discovered that my camera was inexplicably not working, I was filled with rage so strong that I wanted to kick the nearby wooden bench and smash it to pieces. As I repeatedly turned my camera off and back on again, scrolled through all the different menus trying to figure out what had caused the problem, and tried every possible combination of settings, a lump formed in my throat and tears came to my eyes. Despite knowing logically that I could take pictures with my phone instead, I was overwhelmed with emotional upset by the fact that I was expecting my camera to work the way that it usually does, and it didn’t do that.

The reason these types of things are so upsetting to me is because, as an autistic person, I start each day with a picture in my head of what is going to happen. I expect and need things to go according to this picture. When they fail to do so, my brain basically goes crazy.

In that moment outside the convenience store, all I could think about was that I had planned to pick up my package that day. Not the following day.

In that moment at the pond, all I could think about was that I had planned to walk around the pond and take pictures with my camera. Not with my phone.

I could not access logic in those moments, because I was so overwhelmed by the fact that things did not go according to the picture in my head. Knowing intellectually that the problem wasn’t a big deal didn’t make me feel any better. I couldn’t move on to alternative plans, such as picking up my package the next day or taking pictures with my phone, because my brain was stuck on the picture of how the day was supposed to go.

So over the past weeks I’ve been beating myself up, both about this series of fails and about my reaction to them. I know that I tend to lose track of simple things, so I use compensatory strategies such as setting reminders, using calendars and checklists, and double checking to make sure I haven’t forgotten anything. I know that I struggle with facial recognition, so I make a deliberate effort to remember people’s features, hats, and clothing items. I’ve been beating myself up about the fact that despite being aware of my weaknesses and taking measures to compensate for them, I still failed. And I know intellectually that picking up my package the next day and taking pictures with my phone are perfectly good options, so I’ve been beating myself up for emotionally falling to pieces over what are objectively minor setbacks.

I am generally perceived as being relatively “high-functioning” compared to other people on the spectrum, and other people with disabilities. I live by myself, I work full-time, I don’t go to a day program, and I don’t have a legal guardian or conservator. I take pride in these things and, quite frankly, want it to stay this way. It is important to me to live a life in which I move about freely and make my own decisions, as opposed to being supervised at all times and having my schedule and activities organized by someone else. I don’t want to be a burden, or a pain in the butt, to the people around me. I don’t want to be erupting in emotional outbursts, ruining dinner plans, requiring people to rescue me from crises, or disrupting people’s days with my needs. I want to be a competent person, both at my job and at the tasks that need to be done outside of work. I want to be a person who is calm, logical, and put-together. I want to be able to complete my activities of daily living independently. I don’t want to be dependent on others.

Weeks like this make me doubt myself – my own competence, my own capabilities, and my own ability to function in the world. Recently my new statues have arrived, something that I know intellectually is far more important than any of the fiascos that I’ve described. These past weeks should have been filled with joy and excitement, but instead they’ve been filled with emotional turmoil. Hopefully I will have a relatively fiasco-free stretch of days, and what I know intellectually to be true will also feel true emotionally.

bookmark_borderMasking is not a privilege

Posted on by Marissa

I’ve seen several posts on social media lately claiming that masking is a privilege.

For those who aren’t super familiar with the world of autism, masking is the ability of an autistic person to essentially “pass” as neurotypical – to copy the mannerisms, slang, body language, and communication styles of the people around them in order to fit in and to avoid attracting negative attention.

Masking is something I’ve done for as long as I can remember, way before I began to consider myself an autistic person in my late teens, and way before I received a formal diagnosis at age 26. 

For me, masking is not an ability that I can choose to deploy in certain situations, while refraining from using it in others. This is because, for as long as I can remember, I’ve had something that I refer to as shyness. Shyness, for me, is a disability that makes it impossible for me to be my authentic self when I am around other people. It prevents me from expressing any opinion that the people around me are likely to disagree with, saying anything that the people around me would not expect me to say, or doing anything that the people around me are likely to find weird, strange, or bad in any way. Shyness is not mere social anxiety; it is much more severe and debilitating. I am not merely afraid to do the aforementioned things, or anxious about doing them, or worried about what the consequences would be if I did them. It is literally impossible for me to do them. I physically cannot force myself to, no matter how hard I try, and no matter how strongly I feel that doing the things would logically be the best option in the situation.

What does this have to do with masking? 

Shyness, essentially, is the same thing as masking. Or, to be exact, shyness is what causes / motivates the masking. Shyness is the thing that forces me to mask all the time. Because of my shyness, not only do I have the ability to mask, but I also have the inability to not mask. I cannot turn the masking off, no matter how badly I want to. 

In case you are wondering how a person could come to have shyness, I am not 100% sure, because I have had it for as long as I can remember. But my guess is that it resulted from one or multiple negative social experiences I had at a very young age, perhaps situations in which I received unexpected negative reactions from other people when doing things that I thought were completely innocuous. When one thinks about it this way, it becomes clear that shyness is actually a form of PTSD. Although the negative experiences that caused it were not life-threatening, my nervous system reacted as if they were, and these same emotions are activated each time I am in a social situation. In other words, every social situation that I encounter, triggers the PTSD. Every social situation triggers flashbacks of the traumatizing events that caused the shyness. The flashbacks don’t take the form of visual and auditory hallucinations of the traumatic events, as is commonly associated with PTSD. Instead, they take the form of re-experiencing the emotions from the traumatic events. My nervous system believes that I will die if I do anything that will be perceived as weird, unexpected, or bad in the eyes of the people around me. Therefore, I am unable to do these things, no matter how certain my logical brain is that I will not actually die or, in some cases, that doing the things is actually the best option in the situation.

The shyness has had a profound negative impact on my life. There are numerous jobs that I cannot do because of the interpersonal interaction required. If a restaurant messes up my order, a service provider gives me a surprisingly high bill, or a store overcharges me, I’m not able to say anything. I’m not able to negotiate with merchants or vendors to try to get a lower price. I’m not able to say no to salespeople who try to pressure me into buying things. If I’m having a problem, I’m not able to ask for help. If I don’t understand something, I’m not able to ask questions. If someone asks me to do something I don’t want to do, I’m not able to say that I don’t want to do it, and usually end up having no choice but to do the thing and pretend to be happy while doing so. The medical system is a nightmare, as I’m not able to say no to examinations, tests, and medical procedures that I don’t want. Perhaps most significantly, for my entire life, neither friendships nor social relationships of any kind have ever brought me the slightest amount of enjoyment, pleasure, or happiness. Social activities are, and have always been, an unpleasant chore, a task that needs to be completed before I can have time to do the things that I actually enjoy. Yet whenever someone asks me to do an activity with them, I have to say yes, resulting in my entire schedule being consumed by get-togethers that I do not look forward to and get no enjoyment out of, with no time or energy for the hobbies and interests that make my life worth living.

Many of the autistic content creators on social media who allege that masking is a privilege, also speak about partners, spouses, children, and close friends whose company they enjoy and with whom they feel truly relaxed and safe to unmask. 

Due to my shyness, all of these things are complete non-starters for me. The entire concept of a friend whose company I enjoy is a contradiction in terms. I only feel truly relaxed and able to unmask when I am by myself, or with my statues. (And then I am ridiculed, and called a white supremacist, for my love of statues.) Living with another person, as presumably those with partners, spouses, and/or children do, would be so intolerable to me that I would probably commit suicide if I had to do it for more than a couple of weeks.

Given my experiences with shyness, it is appalling that someone would claim that masking is a privilege. 

Those who claim that masking is a privilege characterize it as a tool, an ability. People who have a tool or ability at their disposal, the logic goes, are privileged compared to those who lack that tool or ability. But for a person with shyness, masking is not something that can be turned on or off, depending on what makes sense in the situation. Masking is not something that can be deployed when necessary or advantageous, and left on the shelf when not needed. Due to my shyness, masking is something that I do all the time. There is no choice. It is automatic. It cannot be turned off.

If anything, it is those without the ability to mask who are privileged. After all, it is such people who are recognized by society as being disabled, and who therefore qualify for the programs, funding, support, and accommodations that people with disabilities are entitled to receive. As a person with shyness, I am not able to act in a way that would reveal my disability. I am not able to tell or show others when I am suffering, when I am having difficulties, or when I am struggling with something. My shyness prevents me from asking for support or accommodations, let alone receiving them. Additionally, if someone is unable to mask, that means that they have no choice but to be their authentic self in every situation. This might be disadvantageous in some contexts, but it also means that if they are accepted by others, they are being accepted as their true self. For me, on the other hand, it is impossible to show my authentic self to others, completely foreclosing any possibility of my true self being accepted.

Whereas some people lack the ability to mask, I lack the ability not to. If I am privileged for having an ability that others do not, then by the same logic, people who are able to take their mask off are privileged compared to me, because they have an ability that I do not. 

In the posts claiming that the manifestation of my PTSD is somehow a privilege, I am implored to put aside my own feelings and thoughts and instead to listen to those who are allegedly less fortunate than myself. But by the same logic, those whose disabilities are more visible than mine, and who therefore do not have shyness, should be implored to put aside their feelings and thoughts in order to listen to mine. What makes people with visible disabilities so inherently superior to me that being a decent person requires me to put aside my own perspective and instead focus on theirs? Why are their perspectives inherently valid, while mine is inherently not? Why are their voices considered worthy of “centering” and “amplifying,” while my voice is considered worthy only of being dismissed? 

Yes, people with more visible disabilities, and more substantial support needs, face challenges that I do not. But as a person with shyness, and a person who has always been held to the same standards as a neurotypical person because I have always been perceived as one, I also face challenges that they do not. I don’t understand why this is considered a controversial concept. 

I have always been opposed to the entire concept of privilege. But when multiple people are claiming that a debilitating form of PTSD is a privilege, it is clear that things have reached new levels of absurdity. The concept of privilege has gone way too far and needs to be challenged and spoken out against. Privilege is a concept whose only purpose is to hurt people, to invalidate their perspectives, and to dismiss their suffering.