Preface
This is part two of a two-part series of articles chronicling my past experiences with disability employment services from 2009 to 2016.
In the previous instalment, I recounted my personal history with DES providers. For this instalment, I will recollect and reflect on the personal feelings I had during that period, and hopefully offer potentially helpful suggestions on how to possibly improve disability employment services.
Entering the Workforce 2009-2013
When I first finished high school at the end of 2008, I remember feeling greatly overwhelmed and anxious about my future. I was so used to going to school virtually every day of my life up until that point that the mere thought of finally being “free” from it caused me great distress. (This is actually quite normal for people on the Autism Spectrum; we are so used to routine that as soon as something major changes, like finishing 12-13 years of education, we can find ourselves is a state of panic and nervousness).
The cause of the distress was mostly due to the questions of “What will come next?” “What will I do?” “How will I survive?”
When I first began going to my first DES provider back in 2009, it was a very daunting experience. This was the “real world” now. I was going to have to contribute to society and put in the daily grind like everyone else.
Luckily for me though, the DES had great staff workers who were kind and patient and who I could tell genuinely cared for me. As a result of the repour I established with the DES workers, my passage into the “real world” became allot less intimidating.
The key word is “patience.” Even though I struggle with social cues, I was always self-aware enough to want to correct inappropriate behaviour and habits. My DES workers who assisted me in my job-hunts during those early years were more than happy to point out when and where I was being inappropriate (i.e. picking my nose in front of people, fiddling with my zipper during conversations, etc.)
They way they corrected me was very helpful; they never scolded and belittled me outright for my inappropriate behaviour, but instead explained to me why such behaviours, aside from being rude and gross for others, weren’t helpful or practical in the long-rung with regards to seeking employment and holding down a job.
From 2010 to 2013, when I worked my first paid jobs, I quickly got comfortable with the world of employment. The initial feeling of distress about leaving my routine life of school had quickly vanished as I enjoyed and embraced my new routine life of earning a living. Looking back, the reason I got used to working so quickly was because my first two jobs were jobs that I could do, and that I enjoyed doing.
For my first job that I had from 2010 to 2011, before moving to my second job, my duties consisted of storing, cataloguing and mingling with customers (it was a retail job). I worked two days a week, on Tuesdays from 9:00AM to 2:00PM; and Saturdays from 4:00PM to 8:00PM. Whatever inhibitions I felt about the idea of contributing to society and doing the “daily grind” like everyone else after high school quickly evaporated as I got used to my new job.
Things got even better in 2011, when I was offered an even better job. For this job, my duties were to upload tapes into a computer so that editors could make commercials for upcoming programs with the footage (it was a cable television channel). I would work whatever nights I was needed. Sometimes weeks it would be a few nights, and sometimes it would be a full week. I would come in at 3:30PM-4:00PM and work until 9:00PM-10:00PM.
The thing I loved about this job was that most of the time I didn’t even need to do much. Most of my job was waiting. I would put a tape in, and begin the process of uploading it into the computer. Sometimes I had a 20-minute program, sometimes I had 40-minute program, and sometimes I had an entire feature film. As soon as the tape had finished uploading, I would replace it with another tape and begin the process again and again. In the meantime, as the tape uploaded, I would have all the time to myself.
By the time I arrived in the office, I would usually be the only one there, so I had the entire place to myself. I was free to pace, wonder and stroll without bothering anyone. Some nights I would bring in books to read while I waited for the tapes to finish (I went through so many paperbacks), and sometimes I would do my drawings and art.
It was and still is the best job I ever had and I’m incredibly fortunate to have experienced it. It was everything I could ask for, solitude, no pressure, no hectic schedules, flexibility (if I couldn’t finish a tape because the computer jammed, they understood), friendly co-workers, time to myself, etc. I guess that’s why I still mourn its loss when it closed down at the end of 2013.
My DES Experience 2014-2016
When I returned to the world of disability employment services in 2014, I was a completely different person then I was back in 2009, both mentally and in my outlook. Whatever inhibitions I initially felt when I first began had long since disappeared after years of being in the workforce. Earning a living like everyone else was no longer the daunting task it was back all those years ago. I had learned what it meant to be a decent employee, the importance of being on time, the joy and satisfaction of earning a weekly income and most of all knowing how not to get fired. I was ready for whatever came next with regards to my next employment.
The DES provider I was originally with had since shut down during the years I was employed, so when I re-entered back in 2014, I was with a new provider with a whole new staff. Because I had spent the past few years working, there was no need to train me in proper work etiquette, like going to a job interview and formatting a resume. All they had to do was fine me work.
Now, I understood going into the DES provider that it was highly unlikely that they would be able to find me another job like the one I had previously at the television channel. I was realistic. I knew that the next job I would get was not going to be the amazingly flexible and cushy employment I had enjoyed for past few years. I knew it was going to be a step down, I just had no idea how much of a step down it was going to be.
When I was first informed about my new job that they had gotten me at the organic fruits and vegetable stand miles from where I live, I was a bit perplexed. Was this really all that was left with regards to jobs available? The fact that it was so far out bewildered me. Were there really no jobs available near where I lived? Was this the only job within distance available? Was this really all I could get? I knew it wasn’t going to be like my previous job, I understood that, but I at least expected a job that was closer, a job that wouldn’t take me nearly two hours to get to.
However, I never asked the DES providers these questions. I rationalized that the reason for this was that the economy must have been so bad at the time that this was as good as they could get me. (Since 2009, I always assumed the job market was bad considering I entered the workforce during the global recession [2007-2009]). I also rationalized that the DES provider at the time must have been incredibly underfunded and that this job was as good as they could get me with their limited resources. On top of that, I was a “millennial” and the crude stereotype of “millennials” at the time was that we were sheltered, delicate, “precious little snowflakes” who couldn’t work an honest day’s work in the real world. I remember distinctly not wanting to be seen like that. I understood that most people work harder, more arduous jobs and that I should be lucky to have any job at all.
So, as a result of these combined factors, I accepted whatever job they gave me and forced myself to be grateful.
When I first began my new job in October, I could immediately tell there was something off. On my first day alone, I discovered that this new job was running a small “puppy mill” operation at one of their locations.
When I was brought in by the DES staff member to meet my new boss at her main establishment, I distinctly remember seeing an aging Jack Russell with protruding nipples. I didn’t think much of it at the time until when I went to the farmer’s market later that day. Next to the organic produce they set up a box with Jack Russell puppies, selling them for $40 to $50 each. I thought it was weird at first. Aren’t puppies sold at proper facilities at not at farmer’s market organic vegetable stands? However, due to my naiveté at the time, I assumed that it must be okay and not be an issue if my new employer would do it so openly. (Since then I have become aware of the inhumane and unethical nature of ‘puppy mills’).
Throughout the day, I would try to encourage people to purchase one of the puppies, until I was finally confronted by an outraged and appalled senior citizen who demanded to know what I was doing. Nervous, I told her that this was my first day and that I was only doing my job. She demanded to know who my employer was and then informed me that she was going to report my employer to the authorities for animal abuse. Now I knew why that dog had protruding nipples, the poor, abused animal was being bred constantly. I never heard of that woman again, and the situation with the jack Russell was never brought up again.
I only worked at that location for only one day, and from then on, I would work at another location, run by the same company, through managed by other people, somewhere near Bondi. For the next 6-7 months, I would work at that location every Saturday from 7:00AM to 1:00PM The job wasn’t great. I didn’t enjoy waking up at 5:00AM every morning to travel across the city in public transport. But, because I assumed that this was the only job that my DES provider could find for me in these supposed ‘trying times’, I stuck with it because, as I believed at the time, it was either this or nothing. So, I got used to it pretty quickly.
It wasn’t all bad. I was able to become chummy with some of my young co-workers, and some of the people who worked in neighbouring stands at the market. However, I never got along with my boss. I tried to initially get to know them and try to develop a repour, but they weren’t interested. So, just left them be.
When news came about that I was being short-changed, I was initially worried about doing anything about it. I was worried that I would lose what I thought was the only job my DES provider could get for me. I was afraid of the assumed repercussions I would receive from my DES provider if my mother went on and held my employer accountable. When it was all over and done, and I found myself dismissed from my job, I was nervous that the DES would scold me for sabotaging all the “hard work” they had gone through to get me that job. But they didn’t. They never brought up employer, or the fact that she was short-changing me.[1]
In the following months after my dismissal where I would come in once a week to fill out a job search list where all I did was just apply online on a job search website, I rationalized that the reason they had me doing this as opposed to figuring out what job could do was that they must have been severely underfunded and had limited resources.
I always assumed that it was because of this reason that the DES provider I was with didn’t really have any major connections in the workforce, and that the only connections that had were with these bottom-of-the-barrel level jobs, like the organic vegetable stand.
That’s why I didn’t want to make a fuss over the fact that the employer they sent me to was short-changing me. I assumed that was the reason why my DES provider did nothing when my mother confronted them and informed them of what my employer was doing. Surely, they wouldn’t be purposely collaborating with an employer who short-changed her disabled employees they got from a DES provider unless they were so underfunded that that was the only job, the only employer they could get for me, right?
And I held on to this assumption when my DES provider got me my second organic vegetable and fruit stand job near the end of 2016. Like the previous job, I didn’t voice my hesitation and aversion to working so far away because I didn’t want to be seen as unreasonable or unwilling to work, I assumed that the job market must be so dire that there were literally no better jobs available, and because I thought my DES provider was so limited in their resources and connections that this was the only job they could get for me.
From the moment I got that job and was told to leave on my scheduled first day after traveling hours to get there, I just knew there was something about this new job I didn’t like. However, what really convinced me was a situation involving another employee.
I distinctly remember one of my co-workers being a visibly intellectually disabled man who had gotten the job through another DES provider. One day he suffered a pretty serious foot injury which caused profuse bleeding that caused half of his white sock to be drenched in blood. I remember my new employer not having a proper first aid kit on hand. You would think such an occupation would have a first aid kit, but no. The poor guy had to wait until his foot stopped bleeding and then get back to work. With an injury that noticeable, one would need to remove the sock, clean the wound and then apply a proper bandage so that the bleeding injury won’t become infected.
Such disregard for employees’ health and safety made working at that organic vegetable stand really demoralizing, which is probably why I nearly cried tears of joy when I got an offer for a better job from my brother the following year.
Reflections
I the years since my last DES provided job, I have never really spoken up about my experiences, mainly because I thought there was nothing really to talk about. I always reminded myself that I should have been happy to have any job at all and that I should have considered myself lucky. As mentioned before, I always feared being perceived as a spoilt millennial who was unwilling and unable to work an “honest day’s work,” and I always assumed that the job market must be incredibly dire.
However, looking back at my working life, I’ve realized that all the best jobs I’ve ever gotten, all the jobs that I really liked and enjoyed doing, all came from friends and family who had my best interest at heart. The first two jobs I got that I really enjoyed both came from family friends, the job I got in 2017 that “rescued” me from my last DES job came from my brother, and my current job that I enjoy doing since 2019 came from my cousin.
This has led me to realize that maybe my assumption about the supposed dire job market might have been wrong.[2] Maybe there were good jobs out there that weren’t bottom-of-the-barrel type of work; Jobs that weren’t in the middle of nowhere, that didn’t run ‘Puppy Mills’ on the side, that ensured they had proper first-aid available in case an employee got badly hurt, and didn’t short-change their workers.
And now knowing that I am not the only one who had these experiences with DES providers, it has really given me hope that maybe much needed change will occur within the world of disability employment services that will ensure that those with disabilities looking for employment will not be taken advantage of.
Suggestions
I will now offer a few suggestions that may help disability employment services better help those with disabilities, specifically those on the autism spectrum, to find meaningful work.
(1) Build a Good Connection.
It really helps to build a connection with the person you’re working with. It gives them a sense of trust and helps with communication. When I was with my DES provider back in 2014 to 2016, I didn’t have a connection with any of the staff members, nor did they try to create one.
Because of this, I didn’t feel comfortable talking to them and communicating what I wanted, and as a result, because I didn’t want any trouble, I just accepted whatever job they gave me. I was too nervous to voice my reservations about the job out of fear of what I thought they would think of me, and as a result, I found myself in jobs that I really didn’t like and were scamming me financially.
Looking back, if the staff of the DES provider I was with back in 2009 had gotten me the jobs, I would have probably found it much easier to voice my complaints because I had that repour with them. Also, because they cared about me, they probably wouldn’t have been comfortable sending me to an employer who was intentionally short-changing me, and then do nothing about it when confronted.
(2) Find Out Strengths and Comforts.
As a result of building a good connection with said person, you’ll be able to get to know the personally and make them comfortable enough to divulge what they like to do and what they are comfortable doing. Through connection building and conversation, the person in question will reveal what they like and enjoy doing, what their “special interests” are, and what specific skills they have, i.e. good with computers, lifting heavy objects, gardening, etc.
It’s also helpful to discuss what they’re most comfortable setting is, as in, what environment they feel most at ease with. Ae they comfortable in crowded rooms or singular rooms? Are they okay with small compacted rooms or open fields? Are they okay in outdoor or indoor environments? etc. (Never once through my time with the DES provider I had in 2014 to 2016 did any of the staff inquire into what I was good at, what I liked to do, what kind of workforce environment I would feel most comfortable working long-hours in, which – for those on the spectrum with sensory issues – is a pretty big deal).
With this information, you can then engage with the person and then discuss the kind of jobs their interests, comforts, strengths and skills are best suited for. You an inquire and debate what kind of employment best suits the person based off of what they’re capable of.
(3) Find Out What They Want in Life.
It would really help the person if the DES provider, after forming a good connection with them, finds out if the person has a goal in life, if they have a specific dream they wish to fulfil with regards to employment. Do they want to be in a certain field in the future? Is there somewhere they see themselves in 10 years? If the person has a goal, the DES provider can offer assistance in the form of helping them devise a strategic plan in order to achieve said goals.
Say, for instance, that the person in question wants to be a games developer. The DES provider can help them find the necessary courses needed that the person can take in order to get closer to his goal. The provider can then help the person navigate what is needed to help them get into those courses and then, with all the information they have gathered as to what the person likes to do and is comfortable doing, suggest they take a part-time job on the side as they enter the course.
The person will feel at ease if they feel that they are on the right track to their goals in life.
[1] I would like to clarify that even though throughout this piece I mention that was always nervous about being perceived as unwilling to work, or “ungrateful” for whatever job my DES provider at the time got me, this was only my assumptions. Never once did any of the DES staff ever accuse me of being unwilling to work, shame me, or accuse me of being “ungrateful.” They never used emotional manipulation at any time. These were only my internalised assumptions.
[2] This, plus the fact, as would later discover, that DES providers weren’t as underfunded as I initially assumed.