Food reflects culture and mental states. Especially the meals of a foodie. My breakfast this morning was a combination of effort at Self Cheer and textural visual reflection of a dull aching oxymoronic state of throbbing-melancholia. Soft boiled egg with mayonnaise and plain yoghurt on a bed of cheap Aldi bacon (microwaved for less olfactory intrusion) and spring onion sprinkles, accompanied by cheap Coles coffee laced with cheerful caramel chocolate. The aroma of the caramel was balm to my sensory discombobulation.
We had another rough night. No rest for the weary. The Door Slammer kicked off the fabulous evening with a supremely noisy party. Her visitors traipsed in, announcing their arrivals with less pomp than raucous ceremony, then the customary now obligatory door slam to welcome each one’s initiation into invigorating zest for Extreme Neurotypical life. Then came the cacophony, introduced by loud out of tune singing of Happy Birthday, then variations on a trio-theme of Shriek-Scream-Guffaw. In and out they went, revitalised no doubt by every sharp slam of the door. No, I was not standing outside. Our units are separated by several feet along a corridor. My door was closed. But I could hear ever single sonic embellishment. Then, thankfully, towards midnight, there was a mass exodus to another party venue, and although the exit was marked by brilliant screeching coloratura and booming basso continuo, I heaved a sigh of relief.
However, my peace was short lived.
Just past midnight, the other group took over. Yet another wee hours marathon of social-studying in the study rooms. No, they were not as roisterous as the Door Slammer Party, but during that time of the day/night, where all else is silent, any noise becomes greatly amplified and yes, excruciating to my hypersenses. I would awake in a state of shock each time one of the social-study army marches in and out of their units, the snapping of closing doors throughout the quietest hours shaking the joints of every animate and inanimate object inside my unit. Lucy has begun to engage in nervous licking. My heart beats so insistently and violently that I am choking and nauseous. I finally stopped trying to sleep and was in a state of zombified high anxiety from 4.30am. Lucy and I were both unable to get out of bed, huddled together in a quivering mass in symbiotic empathy. I finally dragged us both out at 7.30am, because I knew Lucy needed to do her morning toilet rituals.
Here is the status post that I put up in my Facebook while still shuddering in bed:
A glimpse into the life of a disabled person. It puts many things in different perspective. This is not a foot stamping exercise, but rather something to think about, for those who are regular functioning able people, who may or may not notice there are disabled people living amongst them.
After the Door Slammer and her noisy party went off to party elsewhere, I enjoyed a few hours of peace and rest, until the Chinese guys began their study marathon session from 2am again. At this time, in the wee hours, where everything else is still and quiet, the sounds of their going in and out of their units for the loo etc activity becomes super amplified. Mini door slamming, i.e. simply letting go of the door and allowing the hydraulic door stopper to perform its normal function on a door and frame made from cheap material, becomes literally earth shaking. Lucy is distressed too. She has been licking herself or licking the sheets in a half somnambulistic state.
Yes, I definitely will lodge a complaint but you know what, I realise that this is just a day in the life of many people with anomalies and disabilities. Buildings are not designed and made to consider disabilities, society is not structured for the disabled or indeed differently abled, whichever way one looks at it. Take my current building for example. Sure there are the wheelchair access paths and functioning lifts, but some of the doors are so super heavy, even a non wheelchair user like myself has to throw my whole body against the doors to open them – how is a wheelchair user expected to open these doors? I know we have rights, in countries where there are anti-discrimination laws in place. However, when a disabled person does not have the time and energy to spend solely on the purpose of ranting and railing just to get decent accommodation, having to do so on top of struggling to keep up with our other functional duties adds to the distress in our lives. In my case, I am here to work on a PhD, but I am recently spending far too much time requesting for sanity, while struggling with the adverse effects of the stress on my body, manifested mainly in very painful autoimmune flare ups, and mounting fear and anxiety responses no doubt triggered by hypersensitivity. Even though the manager here is sympathetic, the logical practical truth is, short of moving the entire cohort of noise makers out of the building, there is little she can do. The underlying problem is the utter lack of empathy and consideration of society for anyone who may need something different from them. Any continuing request for some basic decency becomes a droning whining complaining broken record, not only to the abled, but to the disabled person making the requests. I will have to move to the larger unit. I do not have the physical energy and fortitude it takes to fight the entire lot of Extreme Neurotypical noise makers. What that former so-called friend said to me in reply to my complaint against her door slamming and high noise activity is the bald truth: making noise invigorates her and helps her feel alive. When a certain activity is a life invigorating source for an Extreme Neurotypical, what is the bet that they will not give up the practice to consider someone else’s need for an opposite way of existence? I am worn to the bone from the battle. My body has just caved in again and decided to hand me a fever and a mild respiratory infection, on top of another sudden and severe flare of ulcers. I should be working instead of recoiling in sensory agony each time the doors slam and my entire unit rattles and shakes, then writing daily emails to the building manager, and making nightly calls to security. Moving to the other unit on offer is my only option left.
I cannot say the world now is any worse than it was before. I was not living in the world before, and I have no authority to make that comparison. In fact, it is quite evident that life is less harsh now in the modern world than it was, and I am extremely thankful for advancements in medical science, technology and certain legal systems put in place. However, I do observe, from historical accounts of humanity, that us humans have learned very little from our past. I was brought up in an elitist, right-wing, ableist-meritocrous milieu. Some of my family members still hold those frigid microcosmic worldviews. They are the ones who, in some way or other, throughout my life while enchained to them, have terrorised, debased, ignored, marginalised my disabilities and differentness, while manipulating and capitalising to the fullest my abilities for their own personal benefit. I am lucky. And grateful. I have managed to escape their clutches, and even found other family relations who have suffered a similar fate and are relegated to the dung heap of the familial hierarchy, but are wonderfully supportive and empathic. I have lost some dear friends to the right-wing monied faction of my blood relations, but I have also found new strong, faithful and supportive friendships. My social world is no longer wobbling on the precarious foundations of flippant superficial gatherings or rabid religious activities serving an insular bigoted wealth-driven holy-huddle. I admit I am poor. What was once the price of a cheap pair of shoes, is now a whole month’s food ration. Life is more challenging now than it ever was before, in terms of financial and material comfort. Yet, I have never been so happy and inspired, so thankful and raring to go, go, go! What were once mere dreams, castles in the air being shot at by dissenting family members, are now concrete possibilities within reach. Oh yes, of course, I understand that they felt threatened by my very act of daring to dream, because they knew that becoming Self would take me away from my subjugation to their Other, but it is not my role in life to serve their purposes. It is my duty towards Self to be all I can be, and serve the Other who have genuine need for what I have to offer, without deceit, oppression or manipulation. My body is my albatross of disability, my autism in all its fullness – detail focused cognition and hypersensitivity especially – is the special ability that only becomes a disability when juxtaposed with the disability of the Extreme Neurotypical sector of society and the silent indifference of the moderately neurotypical. Terrorism exists even in subtle levels of our social lives. The Extreme Neurotypicals are terrorists in our midst, bullying the weak, vulnerable and voiceless. Abusing the ones who dare to speak out. My situation is a tiny glimpse into the insidious evil undercurrents at play.
More and more, I am convinced that for real change to take place, we need the help and combined power of the moderates, the people who are not bullies, not terrorists, nor targeted victims. For as long as the so-called ‘moderates’ among us remain silent and unwilling to stand up and lend their voices to social change, the extremists will have their way. For as long as the ‘moderates’ tell us protestors to “suck it up” and “tolerate” and “forgive” the terrorising tormenters, they are lending active support to tyranny. The disabled and the differently abled need the voice of the ‘moderate’ as allies to our chorus for a basic fundamental right to exist without persecution. I am grateful for my friends, who stand behind me in many ways, in my struggle not just to survive but to flourish. I still have options. Even if I have to subsist on cheap Aldi $5 bacon as a main staple, I still have small choices I can make. There are many others who do not even have these options. They are the reason I am pressing on with my vocalising and speaking out. Even when I may be deemed a nuisance and a waste of money (this is not new to me anyway, whether I try to comply with my status as a slave to colonial power of Other, or now continue to exist as emancipated former subaltern, I will forever be seen as a nuisance and an ungrateful rogue vassal to some), or vilified in a similar way as other disability advocates (check out this previous post about Esme the Guide Dog and her advocate handler Cassandra). Nevertheless, if I can leave behind just one positive and helpful trace of my existence, I would have lived a fuller life than that of my tormentors, the social terrorists and/or the silent cowardly or careless ‘moderates’ who never made the effort to stand up for a higher cause apart from Self interest. I do not blame the latter, self interest is paramount, even the disabled advocate based on self interest, but I am merely pointing out that we cannot do this on our own. We need a concerted symphonic and yes, even Wagnerian epic endeavour to achieve inclusivity and clemency in our society.
Perhaps in the next generation? I continue to hope and dream.