A Difference of Ability

By Emile Cooper

A Difference in Ability serves as a coming of age story for a young autistic adult who has faced trauma at the hands of her caregivers and now looks for her independence while just trying to enjoy life. Rachel is smart and inquisitive, but she speaks predominately in short bursts and echolalia. Through having the chance to help her learn skills, face her fears and grow, Jesse realizes that there is more he can give. He no longer feels like he has to be pigeon-hold in a career that leaves him feeling dissatisfied. Through meeting Rachel as well as other people associated with the Independent Living Centre, Jesse becomes more aware of the issues that the disability community faces at large. These are issues of abuse, and personal autonomy. Everyone has a different way of navigating the world.

This story deals with themes of abuse of vulnerable populations, compassion fatigue and coming of age for disabled youth. I feel like this book would be enjoyed by young adults on the autism spectrum as well as people working with them and who want to learn more about them.

• Language: English
• Publisher: Tablo Publishing
• Release date: Aug 16, 2021
• ISBN: 9781649698490

Book preview

Chapter 1

I finished changing my patient before carefully sitting him up on the on the bed, careful to support his head. I sat myself down beside the bed as I released my hand from underneath. He looked at me, with all the ability he had to move his head, and he motioned towards his wheelchair in the far right corner of the room. I shrugged and slowly got up.

2 pm is the time when Charlie usually wishes to go for a walk to the waterfront to see the lake, watch the birds and then head back. I slowly walked over to where his wheelchair was kept and brought it over to him. From a sitting position, I lifted his one-hundred-pound body slowly off the bed with one arm under his legs and one around his back. His body went limp; he felt like a small child, helpless and vulnerable.

Sometimes I wonder how anyone could want to live like this; whether it would be a mercy to simply let them die peacefully. Would I want to live if I could barely move or speak? If someone had to help me with the most basic of activities that even a toddler could do? Though, he knows no other life, and I do.

I rotated myself and slowly lowered him onto the chair. I saw a smile light up across his face as I placed him down. He knows that he is going outside and that for just a couple hours he can escape the confines of the four walls of the nursing home and of his bed and he can feel the warm sun rays on his face. I took his chair by the back handles, wheeled him out of the room, to the elevator and into the outside.

Walking him down the street has always been an ordeal. People stop and stare at the gape-faced man in a wheelchair making T-Rex arms and flapping his hands slightly. I sigh and just keep walking. I try not to let it bother me. No one has ever approached the two of us—I think they would know better. I am like the service dog; an extension of this man to enhance his abilities. They know to stay away, from both him and from I.

He points at a garden of flowers that had recently bloomed on the street. They are quite pretty. Lilies, Irises, orchids, and roses, dancing in the afternoon sun. I slowly push him closer to see. A smile lights up across his face as we move in.

At the waterfront are a flock of ducks and geese, I hear other birds chirping in the trees nearby. The sky a crisp blue and the afternoon sun reflecting on the water. I watch him move his head slowly to gaze at the horizon.

We have seen this exact same image for three days in a row, I think as I slump over on his chair.

Sometimes I wish I had not been given the gift of enlightenment. I could be perfectly content to simply stare out into the scenery. Just be happy to be alive. I wonder if that is what he thinks.

Birds! I hear him say softly.

I snapped back and wheeled him closer to a male mallard who was standing by the water’s edge. His magnificent purples and teals almost sparkled in the sun. It’s a duck, I said to myself. I try to be cheerful for him.

He has a severe form of Cerebral Palsy; I and the rest of the attendants working in the Long Term Care Facility are the only way that he does anything. Otherwise, he would just be in his bed all day and night, lying in his own filth. Hell, he would probably be dead if it was not for us. His parents gave him up two years ago when they retired. They had taken care of him long past what they thought they were going to had they had a normal child.It was time they were set free, at least that was their take. So they, like so many other families before them, dumped him off on our doorstep, gave us the cash and had his disability funds transferred directly to us. I guess they would rather pay someone to wipe his ass than wipe his ass themselves. Wiping your child’s ass is cute when they are a baby, not when they are 40. I chuckle every time I think about it. You start to develop a sick sense of humour working here (Jesse you sick son of a bitch). If you were to look at his history—we keep visitation logs of all our residents—it would tell you that his parents hardly visit, and he doesn’t have anyone in the means of friends. We are his only company.

I look down at my watch to notice that it is past three-thirty in the afternoon and I need to get him back before four. At approximately four-fifteen, one of the nurses comes in to read the residents on his floor a chapter from one of the books in the library before getting set up for dinner. I turned the chair around and started to head home.

Bye Bye, I heard him say as the chair moved away.

I dropped him off in the reading room at six minutes passed four.

The evening nurses would take him and the other residents through supper and send him to bed after the activities.

I have taken the evening shift a few times here. They are a bit more laid back as a large number of the patients simply occupy themselves with watching TV or each other when they can.

I would often get stuck I reading Huck Finn to a man with Alzheimer’s in the seniors’ wing upstairs. Since different individuals looked after him on different days, we often did not keep track of the chapters and he could not remember. As much as possible, staff would leave marks and messages on sticky-notes in books to help us along. Occasionally I would just start from a random chapter and read until he had had enough. I think I’d gone through the whole book three times. By the third run through I would just bounce around the book, and add things in just for my own sanity. I had hoped he would notice, may be a glimmer that he had not completely slipped away. He seemed quite delighted to simply hear my voice. He’d claimed that I reminded him of his Grandson whom he has not seen in years, or so he says. His Grandson comes approximately every other week. My colleague has been called everything from Bradley to Brian—his name is Brendan. He has 16 of the same snow-globe sitting on various shelves and nooks in his bedroom. They scatter light and twinkle.

I wiped my face as I head down the hallway to my locker. As I walked passed the break room I saw a few of my colleagues setting up to play poker after their shift. I heard a voice from within the room.

Hey Jesse!

I recognized Sara calling me in to play poker with the gang. They typically do it every Thursday right after work. I guess as a way to socialize and pass the time. No one has ever lost a large sum of money. Its all for fun and they would help each other out if anything really bad happened. I used to really enjoy playing with them. Sometimes we’d go out for drinks after.

Hi Sara! I said to her. Sara was one of the nurses working at the home, about the same age as me but always seemed leagues ahead.

You want to come in? she said with a smile.

I quietly shook my head trying not to look at her. Not tonight. I quickly changed and headed on my way.

The bus ride back to my apartment is approximately thirty minutes long. I sat with my head tilted back and my left hand slightly out the window, feeling light spring breeze. Next to me sat a woman who did not seem to understand the invention of headphones, nor common courtesy, for I could hear her music belting out of her ears. I hope she grows deaf in her old age. I imagine myself pulling her headphone from her ear and screaming into it, that’s nice Jesse! I got off at my stop and quietly walked the short walk to my apartment building.

My apartment is a small one bedroom on one of the upper floors of the building. The bachelor-pad, the man cave, having a place like this gave me more disposable income. That is what I told myself when I rented it days after my 21st birthday. I was still in the landed full time job at a major care facility/nursing home after bouncing around for about eight months after graduation phase. I guess you could have called it my bright-eyed and bushy-tailed phase.

Resting upon my wall is my Personal Support Worker certification dated to four years ago. Alongside it a certificate in Social Work which I picked up on the side. I wanted to help people; I do it every day. Taking care of those who are unable (or simply less able) to take care of themselves. There are dishes in my sink from three days ago, the kitchen counter is damp, there are pots on my stove-top with residue from meals past on them, my bed is not made, and there is a yellow ring inside of my toilet bowl—just to name a few.

The more responsibility was put upon me, the less I felt the need to keep up with responsibility in my personal life. I guess this is my way of claiming my freedom, in a place that is truly mine. Or maybe I have just become a lazy slob. Everyone else just comes first. I tell myself there is no time for this saunter over to my bed.

Just after six-o-clock; Lorazepam, Abilify and the trusty sleeping pill; a concoction I take every night, one to calm me down enough so that I can sleep, the other to two so that I do not yell and scream at everyone and walk out of work the next day. Trust me honey, one might think it makes me into a mindless zombie, but it is what keeps food on the table and money in my pocket for now. The money I need for them ironically. Down the hatch, they go as I slump onto my mattress and close my eyes.

I am lying on the ground outside at night. The cool grass feels damp on my hands. I run my fingers through a small clump beside me. As I move my hand I gently graze the hand of the person sitting beside me. I can feel their presence close to me. My mind tells me it is that of a young woman, but I do not see her face: just an outline in the night. Above us is the swirling night sky. The band of the Milky-way arcs over us as though we are deep in the countryside, far away from the light pollution of the city. I have not seen stars like this since I was a small child. Only in my dreams can I conjure up such beauty. The smoky nebulae swirl and the flickering stars almost seem to dance. I reach my hand over and place it onto the hand of the person beside me? Do I know her? Who is she? Her hand feels soft and warm to the touch. I hear the grass shutter beneath her as she inches closer to me.

Suddenly the ground around me turns to liquid and I plunge deep into the watery abyss. The cold water pierces my skin; I have to fight vigorously to keep from drowning. I feel myself being swept away in the currents. I close my eyes and let my body go limp.

I opened my eyes and awoke in a shutter just after 4 am. It was just a dream, I told myself. Those dreams been occurring more and more, every time I feel good and happy, I am suddenly drowning and screaming for my life. I slowly lifted myself up to sit on the side of my mattress. Rubbing my hands together, they felt moist and clammy. There was nothing I wanted to do more than crawl right back into bed, but I pushed myself up. My body felt like it weighed 400 lbs; it took every ounce of effort I had to stand. I made my way over to my computer desk and opened up my laptop.

I noticed that my supervisor, Harold, had sent me an email.

He must have sent it to me last evening. Curiously, he did not mention anything to me before this. He requested my presence in the morning before work.

I rubbed my face in anxiety; this cannot be good. What could I be doing wrong?

At seven AM., I stepped outside to go to work. The morning air was cool and crisp and felt thick with moisture across my face. I looked up to see puffy clouds carpet the sky as though it were on the edge of rain. Just another sign that I should roll back into bed and forget about reality, I told myself. But I continued on, hoping that the rain would hold out until I got to the bus stop.

Chapter 2

Harold’s office is quite large, almost the same size as my bedroom. As I sit on the chair in front of his desk and gaze at the four walls, my legs twitch rapidly in my seat. I make as little eye contact with him as possible. He is looking over my employment record. I have been working hard, always on time, what could he want?

Jesse, he began. He handed me a folded up letter.

You’re laying me off? I asked as I skimmed through the letter he handed me. Was this just a nice way of letting me go?

This is for your own good Jesse, he said to me. If you want, you can come back and work part time, but you need to take a break! We need to do the paperwork so that you can qualify for employment insurance," he replied.

Take a break? So this is a formality? I said as I slammed the piece of paper on the desk. I wanted to rip it up, tear it to shreds! But I did not.

Look at yourself Jesse, he began. You’re constantly tired, you slouch over patients’ wheelchairs, and you come to work hunched over with your hair unkempt.

I instinctively patted my hair down as he said that to me.

You sit by yourself slouched over at lunch. You barely talk to any of the patients, or your coworkers.

Conversing with the patients is not in my job description. Not like any of them have anything ground-breaking to say. Did Sara tip him off? She was always such a suck-up.

Your head is always low and you are just doing the bare minimum. Our residents like to be greeted; make them think that this is more than just a job to you. Their families are paying us after all. If this is a job, then go work at Loblaws!

I let out a sighed. He was right; I have been going on autopilot lately.

I know you are a good employee. You’re reliable and you do a good job. I just want you to put some spirit into your work. Take a break, enjoy yourself.

I should have at 6-10 months of employment insurance available. What will you write on my record of employment?

That you are being laid off and returning in the beginning of the new year.

May was waning out and June was upon us; the weather was getting warmer. I could take an extended vacation on 60% of my income. I could rest up, see my parents, some old friends, I could even look for other employment options.

We will pay you out whatever vacation pay you have and if you need any help just ask me.

So you are just letting me take off for the next six to eight months?

Harold shrugged, I will see what I can do to get you back sooner. I may put you from five-pm till ten at your regular pay twice-a-week. This should top up your income enough. If you want to or need to come back after 6 months, just let me know. And if you need any other financial assistance, just let me know. This also gives us an opportunity to hire someone new on contract whom does not have a lot of experience for less and train them up.

That was just enough hours to keep me here so that I couldn’t run away. How convenient! To top it off, he had to squeeze business into it, it could not all be about altruism and compassion. So what should I do throughout the day? I asked. I had been working so much that my brain was drawing a blank on what to do with all this spare time.

He handed me another piece of paper. I want you to check it out.

It was a pamphlet for the Independent Living Centre a few blocks from here.

They are always looking for people to donate their time. They are particularly short on people with real background and experience.

Because they operate on volunteers and no one wants to work there. He is making me do charity work. So instead of taking care of disabled people for pay, you want me to take care of them for free?

Well, it is a lot more hands off than here, he says with a chuckle, Their people are typically more high functioning than what you are used to dealing with, he said with a chuckle.

Great, that probably means I will have to socialize with them too. He is volunteering me to do charity work while on EI. I should just use this time to look for a new job. What if I just look for a new job? Clever Jesse, clever!

Harold shrugged, It’s your prerogative, it’s just a suggestion. Consider it personal development. A few other staff have volunteered there or have taken co-operative assignments. I have even offered the same arrangement to a few people. Ask them about their experiences.

This is a tough job and sometimes people need a break to de-stress. Explore other avenues and connect with people on different levels. Make you remember why you are here. He answered.

Why me? Defeated I finally asked, So what am I doing for the rest of today?

Relax, think some things over. I have to pay you for the day anyway. You will later take Mr. Johnson for a walk for one last time, as usual, he answered.

We cannot forget to take my wheelchair-friend for a walk now can we? So, you give me the day off on a Friday – you want me to go to the centre and check them out right now don’t you? You are twisting my arm.

I cannot make you go there; I am only making a suggestion, although, I do know quite a few people who work there, and they would let me know, if you did show up, he replied.

I slipped the letter into my pocket and slinked out of his office.

The personal support workers wear purple scrubs while the nurses wear bright red to pink colours; the one male registered nurse in our wing typically wears light turquoise scrubs. I have seen him in the deep red scrubs once; he dawned the soft blue-green ones today in the locker room. I reached into my locker to pull out my work clothes but then I let them go. I felt them slip out of my hands like sand at the beach. Almost four years, and this was the thanks I got? They floated down and gently landed on the floor of my locker. The sound of foot-falls and people rummaging through their lockers combined into an eerie muffle such that I could not tell where one particular sounds were coming from. I felt a slight tap on my shoulder and a shudder crept up my spine. I turned around to see Sara dressed in bright pink scrubs, her blonde hair already tied back for the day. She had a smile and on her face as she looked at me with impatience in her eyes. I simply stared back.

How’s it going? she asked me.

I gave a slight smile and replied well.

What’s the old fart got for you today?

I quickly look at the clock, it reads 8:52 am. Can I talk to you a little more privately? I asked her.

I have worked with Sara as long as she started here. She started here as her nursing practicum with the university the same year I got hired on as a support care worker full time. She got hired on as a full time nurse after graduation, just one year after. With her working as a nurse, and on her way to being a lead nurse, she is often guiding me and telling me what to do now.

Sara complied and walked me outside of the locker-room/break-room area and into the hallway. My hands were shaking as I opened the folded up piece of paper. I’ve been given a real special assignment. I told her. Not only did he lay me off, but he gave me the suggestion to volunteer my time at the Independent Living Centre. What a drag? I watched her face and head go limp for a brief moment as I said this. She quickly regained her posture however.

So Harold volunt-told you to go take a stress leave, she replied with a slight smirk.

A stress leave?

Yea; he does it a lot, thinks it will help increase worker morale instead of working us like factory dogs. It’s his way of stroking his own ego.

So him laying me off is some strange-cloaked good deed to society?

Look, it cannot hurt to go check the place out. You’ll be on E.I. right, so go get paid to volunteer for a bit... Take a break. Jesse... her voice trailed for a second.

I glanced up at the clock to see that it was 9:00, Thanks for the chat, you really set the record straight, I told her before darting off.

Sure, she sad before making her way off to work.

I trudged out of the building, stomping down the hallway to the doors. Before I left the building, I took one more look back into an empty hallway. I stepped outside onto the wet ground. The air was thick with mist, and the sky still covered in clouds. It did in fact rain while I was inside. With no bus in site, I began walking in the vague direction of my apartment. My hands stuffed in my pockets the entire time, scrunching up the paperwork Harold had sent me. Where did I go wrong?

I graduated four years ago from my Personal Support Worker college program and had gotten the job at the home shortly after. I was not ecstatic, I simply felt satisfied. Vindicated that my hard work paid off and that could just work here and help people. I would check people’s vitals, I would inform nurses, I would help profoundly disabled people with normal daily activities that I simply took for granted. There was one girl with severe Muscular Dystrophy. She could only walk a few steps on her own and otherwise had to use a wheelchair and crutches to get around. I helped her put on a green and yellow sundress, before going outside on a summer’s day. She was rail-thin and by the time I had helped her into the dress, she looked like a porcelain doll. She was so pleased with the dress that she had to stand up and do a twirl in the mirror, and I was elated to see the smile on her face. She nearly collapsed after the twirl however. I had to catch her in my arms and place her in her chair to go out. She looked defeated when she fell to her chair.

I wanted to give back the dignity to those whom seemed to have had their dignity stolen from them. Taken by a society that no longer cared for them. A society that gawked and stared at them and in some cases treated them as less than human. I also wanted to make the care system better, so that one day, I could be allotted the dignity I deserved, when I finally have to use similar resources. But somewhere along the way of spoon feeding, inserting catheters, tube feeding and changing diapers, I just did not feel like it mattered anymore.

I checked my watch, the bus ought to be coming soon, as I approached a bus stop. I had passed three while walking and not seeing anything come by. I stepped on slowly and sat in the back of the bus.

Chapter 3

The clock in my apartment read 11:30. Now would have been