This is a musing about confronting, and the confrontation of invisible disability.
What happens when the invisible is confronted in a stark and abrupt instant?
A recent encounter inside the lift on my way up to my art studio brought me once more, eyeball to uncomfortable eyeball, with the conundrum of ‘framing’ an invisible neurological difference. In my case, it is autism – and this is an issue that autistics living in the normative realms are constantly faced with, because we exist and function in the midst of, and juxtaposed with, the ‘normalcy’ of neurotypical constructs and systems.
I recently applied for and received official permission to bring Lucy to my art studio on campus, as my psychiatric assistance dog. I went through all the proper channels: obtained a doctor’s letter from the university health clinic, a report and request notice from the Student Equity and Disabilities Unit, full support from both my supervisors, and subsequently final approval from the Faculty Manager. Despite my anxiety, everyone involved in the process were wonderfully kind, and additional to granting my request, I was allocated a space to suit my particular sensory needs, as well as one which takes into account Lucy’s presence.
There were a few initial minor hiccups where the security office was not informed, but I explained the situation to the officer in charge, and he was very kind about it, as were all the other security personnel who subsequently approached me about Lucy’s presence on campus. They were only doing their jobs, and they all became very friendly and accepting of Lucy once I had explained, and a few even stopped to chat awhile about retired racing Greyhounds. There had never been any awkward moments at all – until this encounter.
This time, the invisible was confronted in a few stark and abrupt moments inside a small confined physical space, occupied by four human bodies in verbal, semantic interaction, and one dog standing as silent witness of it all.
On that day, I was on the way to my art studio, and one lady and two male security staff entered the lift together with Lucy and me. As the lift door closed, the more senior of the security officers, who had not met me and Lucy before this, informed me that dogs were not allowed on campus. I was prepared for this, and it made logical sense, because I know security need to do their jobs, so I explained, without difficulty, that I had official permission to bring her with me as my disability assistance dog. He was immediately satisfied, and proceeded to chat with me about Lucy. It was in the midst of this, that the lady, who had heard and witnessed this interchange (she was inside the lift with us and observing us intently, there is no way she didn’t hear what I said to the security officer), then decided to address me.
“Surely you don’t really need an assistance dog, do you?”
I was most taken aback at her interruption, and even more so at her tone of voice. I do not interpret the eyes or body language well, and often fail to grasp the more implicit elements of social exchange, but I am nevertheless very sensitive to tones and tonal nuances. The tonality definitely did not come across as friendly to me at all. I looked up at her (she is a tall lady and I am rather short), directly at her eyes, and replied, as calmly as I could, trying not to allow my voice to quiver or squeak from anxiety at being accosted in such a manner. “I am autistic and she is my psychiatric assistance dog,” maintaining a steady eye contact throughout. Was she taken aback at my very firm, quietly confident rejoinder? I am not sure, as I am unable to read the eyes, and I only make eye contact because I have trained myself to do so, and I know for a fact it is useful in interactions with most neurotypical or non-autistic people, especially in situations such as this one.
We arrived at the 4th floor, the security officers got out with me and Lucy, but the lady discovered she had forgotten to press the lift button to the 2nd floor, which was where she was actually headed. She must have been distracted by Lucy’s presence and the unusual goings on inside that little space for those few moments, now forever locked in ephemerality.
The interchange occurred in real time, but the multi-dimensional meanings it produced began to reverberate in a ponderous, deep basso continuo only after I had navigated myself and Lucy into my studio space, settled Lucy down and proceeded to inspect my fabric installation. Only then, did the incident begin to ‘register’ itself properly in my consciousness, and it was then that my brain was able to start the process of analysis. From here, I could gather enough visual and sonic informational recall of the event to form an intellectual opinion as well as an emotional reaction: I found it increasingly disturbing.
For the uninitiated, this ‘delayed effect’ is quite typical of autism – I am less able to react ‘in the moment’ during social interactions, and my brain takes a longish time to absorb, replay and assimilate the verbal exchanges and various innuendos and even body language expressed. By the time I have managed to grasp anything at all, the moment is usually long over. The time lapse is even more pronounced when anything like a potentially unpleasant face-to-face encounter occurs. Well, this time was like all other times.
A few questions now linger in my mind, playing out incessantly, this kind of mental processing being another ‘side-effect’ of autistic cognition. It isn’t a grand emotional issue, it is a persistent discomforting feeling that something is not ‘right’ in the area of logic and reason. Many of us find it difficult to ‘let go’ of brain worms, until a logical and truth-based solution based on concrete fact is arrived at – which, in a neurotypical social world, is often not possible.
What was disturbing (to me) about this exchange with the lady?
The most immediate cause of disquiet has to do with expectation. As a result of all the positive support and reactions I have received thus far from everyone at every level regarding my having with me a psychiatric assistance dog, I was lulled into a comfortable expectation of kindness. I expected questions, but I did not expect to have to deal with any unpleasantness, especially not of this nature (yes, many autistics do tend to ‘file’ things in our minds, including people, and our brains function very much like library systems). In other words, I was quite unprepared for negativity, especially within a setting such as this one. Many people, even the neurotypical, do not like being unprepared, but the autistic mind is particularly thrown into chaos by sudden jolts of change, and our minds and senses do not function optimally when surprised – we are not built for easy social banter and spontaneous, impromptu rejoinders. As a result, even those of us who are able to quite expertly ‘mask’ or ‘perform’ neurotypicality become mentally and emotionally ‘stuck’ in many such instances. Our reactions then have to rely on learned responses, and how well we execute these learned responses depends on the amount of practice and level of skill at ‘play acting’ that we may or may not possess.
Apart from being caught off guard by the unexpected, a more sinister reason for my sense of unease began to unfold in my mind.
What prompted this lady to react that way?
Is it a lack of education? In the case of this lady, a senior member of faculty at a prestigious university, the issue most definitely shouldn’t be a lack of education. Did she think I was flouting a rule (no pets allowed on campus)? It could not be so, since she clearly heard my explanation to the security officer – that I had already obtained official permission from the Faculty Manager to bring Lucy with me as my assistance dog, and that the person in charge of security is aware about us. This brings me to the logical conclusion, then, that her question was issued as a challenge to a) my need for an assistance dog, which is thus an intrusive and high-handed questioning of my disability itself, and b) the truthfulness of my explanation.
What is amusing, in a rather dark way, was that it only took all of that brief period of time in the lift, going from the ground floor to the fourth floor (and we hadn’t even arrived at the fourth when she spoke to me), for her to make an assessment of me and then decide to question the validity of my needs, and therefore my disability. I did not mention autism to the security officers, nor did I need to – they were satisfied that I had obtained official permission, and they did not press the matter further. The irony is, the people who may be perceived as less informed, less ‘educated,’ were more accepting of my explanation than this lady. Not even experts in the field are able to make an accurate assessment in such a short period of time.
An invasion of privacy.
I did not realise this at the moment, because I am slow to grasp implicit meanings in social interactions, but this confrontation was actually an invasion of my privacy. In order to provide a polite and truthful answer to her challenging question, I was forced into revealing the specific nature of my disability and justify my right to exercising my rights. The lady, being a senior member of faculty, has the right to ask questions, especially if someone may be perceived as breaking the rules, however, if she had any valid suspicions about me, she should have asked to speak to me in private, where appropriate exchange may take place, without offense to either party.
A question of integrity.
This is by far the most sinister of all my reasonings on this matter. Taken literally, not wishing to attach meanings to her question because I am not adept at the fine art of innuendo, the lady’s question was worded in a way which challenged any sort of need I may have for an assistance dog. To me, upon reflection and dissection, it seems a broad sweeping pronouncement – with an even more sinister undertone, than just a lack of tact. She is implying, by logical inference, that I am lying: either that I am lying about having obtained official permission, or that I have lied in order to obtain permission for an assistance dog. The former is upsetting, but perhaps a rather backhanded compliment that I have the gumption and daring to pull off such a stunt as bringing a very large sized dog in to campus with me, pretending that I have permission to do so. (There is little logic in this, though, because I wonder WHY anyone would want to do such a thing for a lark?) The latter is a slur on the abilities of the people involved in the process of granting official permission.
This happened some days ago. Yet, I am still deeply disturbed. The sensory shadow of the event engulfs me now each time I approach the lift with Lucy, and I have to fight the urge to flee, or the innate autistic instinct to isolate and avoid – I know I need to go to that space and use it, to take control and own it. My work is of foremost importance to me, and I also know I must not deprive myself of what is officially and rightfully my right, so I will continue to bring Lucy with me when I need her. Unpleasant as it may be, and despite the lingering bitter effects, my intellectual attitude is that every situation and encounter is fodder for more thought, more analysis and therefore more creative expression. I therefore do not approach this from a negative perspective, although the implications disturb me, because my integrity is important to me.
I am well aware that as an autistic individual, it is somewhat a responsibility of mine to advocate and educate and share about autism, to foster better understanding between different neurocultures. That is and will always be a passion of mine. However, I have an exhibition coming up which I really need to focus on, and I cannot afford more time and effort than I have already spent to pursue the matter for the purpose of a mutually satisfactory empathic resolution. It is another fact of life for autistic individuals that pursuing resolutions which involve more social interaction is extremely taxing for us, even though many of us who wish to function within the constructs of the world at large understand this and make constant effort for the sake of reciprocity and harmonious co-existence. In this case, because of an even more pressing need to focus elsewhere, I shall have to leave this matter hanging until such a time that I am better able to derive a conclusion, and I shall then dutifully write about it too! This musing merely represents a process of my mind, the result of some relentless thought processing, and the immediate purpose of this post is to show the reader what our minds often go through when the unexpected is encountered, especially one of a social nature.
I end this rambling with a quote from The Little Prince, by Antoine St. Exupery.
Voici mon secret. Il est très simple: on ne voit bien qu’avec le cœur. L’essentiel est invisible pour les yeux.
(English translation: Here is my secret. It is very simple: It is only with the heart that one can see rightly; what is essential is invisible to the eye.)
I am pleased to write that the matter has come to a most satisfactory conclusion and resolution, with the help of people who care and are willing and able to lend their support in effective ways.
Some pertinent lessons I have learned from this experience:
1. Speak – even if it takes time (because of the way we process social interactions), make the effort to sort the jangling tangled thoughts out and verbalise as much as possible. Yes, our innate instinct is to isolate or flee, but if we can push through this and reach out, there is a better chance for resolution for self, as well as creating awareness for others like you. And do not be afraid to seek the help and advice of someone or a select few people you respect and trust (again seeking help does go against our innate autistic tendencies, but we need to do this to be heard!).
2. Move forward – do not stew inside the whirlpool or quicksand of endless thought processing. Take the step forward towards a positive action, even if it is uncomfortable.
3. Neurotypicals can be your allies! – this is not a childish feet stamping game of ‘me vs. you,’ ‘us vs. them.’ Just as there are people with differing attitudes, moral values and lifestyles within the autistic community, neurotypical society is an eclectic spectrum of variations too.
I am more and more convinced, as I persevere along this path of advocacy, that in order to properly canvas for acceptance and awareness of disabilities, especially invisible anomalies such as autism, we need the help of those who are different from us but who share a common vision for reciprocity and understanding. All sides of the equation need to work together towards positive change. I count myself most fortunate to have found many wonderful neurotypical friends and allies who offer freely their support and different perspectives, and who sometimes act on my behalf, navigating difficult areas which I am much less adept at doing and in ways which I am unable to.
I appreciated your musings thoroughly. My only issue with any part of it, and I know you will appreciate how one can become fixated on such a detail, was the reference “pity-party-Aspie community”. As an adult woman of 54 years of age on the spectrum, only recently having a confirmation in the last 2 years, I found that reference offensive. I alternate between full disclosure and hiding it. I lack the ability to effectively convey, when challenged in any way, exactly Asperger’s or ASD means. After a lifetime of knowing there had to be a good reason for my inability to socialize comfortably, I have grown to be able to mask my fears and uncertainty in social situations through avoidance as a defense mechanism. Many neuro-typicals will, as has been my experience, claim when offered ASD as an explanation, that we are using it as an excuse for bad behaviour. So you will have to forgive those who react in a way that might seem to be a “pity-party-Aspie community” expression of wanting and needing to be heard.
Thank you for your thoughts. I have no issue with, in fact, I fully support our community of people who are working tirelessly to advocate for better understanding and education and acceptance of invisible disabilities, not merely Autism but there are a wide range of other neurological difficulties that people deal with and find it difficult to adjust to when juxtaposed with the rigidity of so-called normalcy in society at large.
I agree with your point about needing to be heard – that is exactly what I am doing and striving to do, i.e. advocate, make our voice known, ask to be heard, take up the podium and speak, ask for acceptance through educating people about autism etc, but I have little patience myself for endless self focused wallowing, which is what the pity-party folks do, whether it is autism or other groups. I have, in the course of my many encounters with fellow autistics, especially the early days after my adult diagnosis when I was searching for likeminded people and didn’t know how to discern which groups were healthy and which not, met people in groups who are so much focused on navel gazing and self-pity that they are wrapped up in their own issues demanding all the time to be understood and excused, and for things that sometimes really do constitute plain bad behaviour and feet stamping. You do understand, I am sure, that AS is a wide and heterogeneous spectrum,and as with all humanity, we are varied in attitudes and personalities, and how we deal with things. My desire to disassociate with the pity-party brigade is literal, no between the lines meanings (I am autistic after all, I do not do between the lines!). In previous experiences, I have been emotionally and mentally drained by these groups, and I assure you they do exist, hence my disclaimer. To me, and this is just my approach and my opinion, there is a difference, a very important fundamental difference, between those who insist on pitying themselves and never wanting to move forward to advocate in positive ways and effective ways, nor do they wish to reach out to even others who are struggling alongside, and those who do actively move forward and reach out towards reciprocity and mutual understanding. As much as I advocate for society at large to understand and consider and be empathic towards the autistic community and existence, I also know it is a great responsibility to choose how to do so, and that I need the help of the non-autistic community to make a difference. Simply put, while I strive to advocate for autism and understanding and acceptance of autism, at the same time, I also need cooperation from people who see things differently and react differently (neurotypicals) and have different talents from mine to work alongside to achieve certain things that I cannot do alone.
And no, I do not consider your self-advocacy as anything approaching a pity-party at all! I do hope you understand where I am coming from, but I also hope that you never become embroiled and drained by negative navel-gazing groups, regardless of the nature of focus (whether it be autism or something else). It does more damage than good, as I have experienced myself.
Thank you again for dropping in and taking the time to leave a comment. Communication is very important to me, and value very much your views! It also gives me a chance to explain things I have said that may be misunderstood! Good luck!
Thank you so much for that well thought out response. I really appreciate the clarification and agree with you 100%.
I find people draining at the best of times and even likeminded, on the spectrum groups, have the ability to lift me up or keep me in the depths of despair. I have joined and dropped out of groups due to excessive negativity. It’s justnot where I want to be.
I am not going to lie on this or any forum, or gloss over the fact that I struggle daily to meet challenges and require copious, often misunderstood, down time. I do not wish to wallow but desire to persevere and find calm and happiness in an overstimulating world.
Thank you again for your reply.
Thank you for understanding where I am coming from. I too am middle aged, daignosed when I was over 40yrs old. I share the same difficulties as all Aspies navigating the conundrum of living in a largely alien system, but also, like you, I have been in and out of depressive Asperger’s groups that serve to wallow more than to uplift. I have come to see that humans are very assorted, regardless of the mental cultures they hail from. My aim, as you put it so well, is to “persevere and find calm and happiness in an overstimulating world” by pressing on and hopefully encouraging others to do so. In addition, the focus of my research and praxis is to find ways to create mutually empathic platforms between different mental worlds. Thank you for sharing your views and experiences. Every positive voice is valuable to me, and makes a whole lot of difference to our forward moving goals for neurodiversity acceptance and understanding!