“I like your ‘can-do’ attitude,” my supervisor told me at my annual review, my first with her, as she’s a new boss.
I grew up in a family that approached everything with a “can-do” attitude. The idea that there was anything at all that we couldn’t do never entered into consideration.
As I examine this, I see it as both an enabling and an ableist attitude.
It has enabled me by instilling the confidence to approach any task, any learning activity, any project, and any dream.
I have learned that it’s an ableist view when I come face-to-face with activities I can’t do, or with those that cost me, in comfort, energy-level, and processing-power, so much that I will need to allot time for recovery. These are areas where I need accommodation to be on a level playing field with neuro-typicals.
What is an ability? What is a disability?
The ADA defines disability in this way:
“…in the context of the ADA, ‘disability’ is a legal term rather than a medical one. Because it has a legal definition, the ADA’s definition of disability is different from how disability is defined under some other laws, such as for Social Security Disability related benefits.
“The ADA defines a person with a disability as a person who has a physical or mental impairment that substantially limits one or more major life activity. This includes people who have a record of such an impairment, even if they do not currently have a disability. It also includes individuals who do not have a disability but are regarded as having a disability. The ADA also makes it unlawful to discriminate against a person based on that person’s association with a person with a disability.”“What is Disability?” adata.org
The simple definition I have come to adopt is that my abilities are those things I do well, without extra accommodation, without excessive challenge, and without requiring help, assistance, or accommodation. In some areas of ability, I’m able to excel.
My disabilities are those areas where I require assistance, accommodation, or modifications, or where I face challenge in a way that is significantly greater or more demanding than faced by neurotypicals. In some areas of disability, I am not able to perform acceptably without significant accommodation. In other areas, especially those requiring executive functioning, activities like paying the bills, cleaning house, hiring and scheduling with repair people, buying a new car or appliances, attending meetings or functions with more than five people, I need to adopt specific strategies, apply coping skills, and realize that I will need to allow for recovery and balancing time afterwards.
A good example of both ability and disability, for me, is online communication. I process and communicate through written text well, so, for me, communicating through online text chats works extremely well. When I first began playing Elder Scrolls Online, I felt an ease in communication that I seldom experience in face-to-face situations. As a result, it didn’t take long for me to fill my in-game friend-list or to create a fun and collaborative guild with other players. However, once most online gamers reach a certain point in their online friendships or teamwork, they move to discord, which has voice chat. This is an area where I face challenges. My mind cannot easily process spoken word, especially when I am doing another activity that requires concentration, like playing a video game. For my online friends, speaking and listening is easier than typing and reading, so they prefer to chat through discord rather than use the in-game text chat. It’s the other way around for me, where in-game text chat plays into my strengths and helps my brain feel good, while voice chat causes extreme disorientation and a great deal of discomfort. I recognize that for end-game content, I will need to use voice-chat, and I have recently begun to stretch my comfort level in giving it a try, but it is not pleasant, comfortable, or enjoyable for me. In fact, it scrambles my neurology and leaves me feeling overwhelmed and a little bit stunned. I feel my intelligence and focus drop, and my game-play suffers tremendously. I really need the accommodation of text-chat in order to be on a level playing field when it comes to in-game communication.
As another example, the way my neurology works, I cannot spend hours in rooms with fluorescent lighting–this jars my nervous system and causes discomfort and anxiety. I need a modified work environment that includes natural lighting.
Probably the most prominent area where my challenges show up is in friendship and social interactions, specifically social communication processing.
When I first began this series, I wrote about a friend who was in the process of deciding not to be my friend. She has since made the decision, and we haven’t been in touch for about six months. The friendship feels over. In some of our last communications, both in person and through email, I tried to express to her that I was beginning to suspect that I was autistic, and that I recognized that I lacked the capacity to meet her expectations and requirements. Her expectations are not out-of-line for a normal friendship, and, in fact, in one of her last conversations with me, she told me that “in a normal friendship” she would have expected the friendship to have progressed in a certain way by this time, with her meeting my boyfriend, being invited over to see my garden, going out with me to movies and weekend activities. I realize these expectations are not out-of-the-ordinary. I also shared with her, from the beginning, that these types of activities are, at present, a bit out of my capacity. She felt that when we were together, we should always be “100% there.” Of all her expectations, this was the one I felt I could consistently commit to; however, my experience of being “100% there” is very different from hers, for when I am completely present, I am often not verbal. I am present, feeling, seeing, and hearing the flow of energy around me and, if I’m with someone, around that person and between us, too.
It became clear to me that for our friendship to continue, I would need to have accommodations, basically, a relaxation of expectations. And it was clear to her that for the friendship to continue, I would need to meet her expectations. And I simply don’t have the capacity for that.
Social communication is another area where I don’t have the capacity to process in a neuro-typical way.
I left the annual review with my boss, which had lasted over an hour, feeling confused, overwhelmed, and uncomfortable. The written evaluation, which I’d read before my in-person review, was excellent without qualification, in every performance area. Yet I could not reconcile that positive review with the experience of sitting across from my boss while she delivered her oral review. She brought up different points than she mentioned in writing. I couldn’t read her face. We talked about current and future work projects, and I found myself going into detail, then trying to reel myself in so as not to bore her with too much detail. It sounded like she was making an effort to speak softly–which I appreciate–but it also sounded like this caused energy to be pent up inside of her, which seemed to feel uncomfortable for both of us. The air around her and the energy shooting out from her was spiky–it felt sharp, like jabs. Does she not like me? How do I make sense of the disparity between what she wrote and this spiky feeling? What is she saying? I can’t remember what she said now, and I couldn’t process it then. What causes the words she speaks to be different from what she wrote? Is this a positive review, or am I in trouble somehow?
I left feeling that I was in trouble, but not because of what was said or what was written, simply because of the feelings and because I was not able to process her spoken words or the other signals that I perceived.
This type of disjuncture between content and context, between explicit meaning and implicit signals, between facial expression and feelings or energy, is a common experience for me, and one I lack the ability to process. I have read that neuro-typical people know how to tell when someone is lying and that they’re able to read hidden meanings and to pick up on social cues and agendas. I lack this ability, and this is where I most often become aware of my disability in social communication processing. I pick up on the things that don’t fit together, but I don’t know what it means.
I think this is why I find the phone and voice chat so very confusing, in addition to my challenges in processing spoken word. I hear the emotions and energy, but I can’t see the face or see the energy around the person. I know even less what they mean, how they feel, and I don’t know when to talk or what I can say, so I am mostly silent, which doesn’t make for a very effective phone conversation.
I was raised by a mother who had been popular in high school, and my sister was popular among her crowd, as was my brother. My older siblings always had at least one friend over after school and on weekends. Making friends was presented as being the most natural part of being human. It was seen as something that was easy and effortless.
Until junior high school, I could not make friends–or if I stumbled into a friendship, I was unable to maintain it. Because of my family members’ experience of ease in friendship, and because of our family’s “can-do” attitude, I was told that if I tried hard enough, or if I really wanted to, I would be able to make, and maintain, friends.
I wanted to. I tried. I failed. This is still the case. This is a disability.
Throughout my adult life, I’ve gone through periods where I’ve attempted to put on my best “can-do” face, and go out there and make some friends. Surely, if I tried hard enough, I could do it! These times have, without doubt, been my unhappiest. I must not be trying hard enough. I must be missing some important secret. There must be something terribly wrong with me. Why am I the weirdest person on earth? I think I’m pretty wonderful, full of love, and that I would make an amazing friend. What is not working? What am I not getting?
In friendship, I need accommodation. I need friends who are willing to email, rather than talk on the phone. I need friends who are willing, at least for a few minutes, to listen to me share a special interest. I need friends whose words match their faces, or when they don’t, will at least explain to me what is behind the mismatch. I need friends who will let me be there “100%” when that means that my 100% might be in silence, perceiving in the different way that I do, feeling the air, feeling the energy, watching the play of light, sharing our being through a non-typical perception.
In “Is Autism a Disability or a Difference?“, Judy Endow writes:
“Being out and about in the community poses significant challenges. The sensory overload and neurological processing differences dictated by our brain along with ever present challenges with communication and conventional social understanding are such significant differences, even though we can accommodate for them, we are usually exhausted from doing so by the end of the day.
“…we are often expected to look and act like typical people regardless of the challenges imposed by the neurological difference of our autism. Because we appear to be like others, our difficulties and needs are thought to be our own personal problems… Others often look at us and ascribe negative intentionality and character flaws to us. ““Is Autism a Disability or a Difference?“, Judy Endow, ollibean.com
That last statement, that others “ascribe negative intentionality or character flaws to us”, rings especially true. My former friend felt our friendship withered because I “didn’t care.” Not having capacity is different from not caring. Some of my limitations with social communication processing have been seen as by others as dishonesty or lack of transparency. Being confused is different than being opaque. Some of my challenges with executive functioning have been seen by others as signs of laziness or carelessness.
For those of us who are what Endow calls “the walking, talking autistics,” those of us who can go into our communities without assistance, our experience of “disability” happens because our styles, our ways of processing and our neurology, are different from the norm. The societal world around us has not been set up for us or to meet our needs.
Sometimes, as a thought practice, I like to flip the situation: What if our way were the more common? What if it the neuro-typical brain were the abundantly synaptic brain? If that were the case, would we approach those whose brains have trimmed synapses as if they were disabled?
“Oh, you can’t see colors when you listen to music? What a loss! Oh, you don’t see energy swirling around other people? You can’t see those light molecules, those sound waves? You don’t feel how everything is connected, and you aren’t in the moment? You can’t feel yourself think?”
The world we would create would be very, very different–much more comfortable for us, and possibly less comfortable for those with brains with trimmed synapses.
I wonder if then, rather than having medical researchers examining ways to make autistic brains more like non-autistic by inducing the trimming of synapses, researchers would look for ways to halt autophagy, so that the non-autistic brain would have the abundant synapses of the autistic brain.
“Here! Administer this drug to your child, it will cease the process of autophagy, so that your child’s brain will be abundantly synaptic and your child will be able to perceive so much more!”
I doubt this would happen. I believe that part of the multi-perceptive gift we have with our abundantly synaptic brains results in an appreciation of diversity. We know that humanity gains something by having a wide range of perceptual styles available. I like to think that, if our neurology were typical, we would, as a society, look for ways to accommodate those with trimmed synapses, just as we wish that others would look for ways to accommodate those of us with abundant synapses. It’s when we’re not accommodated that our abilities lead to disabilities.
Endow, Judy. “Is Autism a Disability or a Difference?” olliebean.com. Accessed 5 Aug. 2019.
“What is Disability?” adata.org. Accessed 2 Aug. 2019.