1996–2000: Opening Moves
My first job, when I was 16 years old, was to translate help-wanted ads for the local Manpower, Inc. office into Spanish. I considered myself very fortunate to have been hired because (a) I would get to use the skills I was learning in class in real life and (b) I had a developmental disability—cerebral palsy—that excluded me from most of the other jobs I might have sought at that age. Many of my classmates were applying for and getting jobs at fast-food restaurants, nursing homes, and hometown factories. However, I was not. I could not do any kind of physical labor well enough to earn a living (or money for college)! What was I to do?
Thankfully, Manpower believed I had power and gave me a chance and so did my first supervisor, Diana. She saw how my Spanish skills could help more people apply for jobs. I was thrilled with the work and the opportunity to do it, but something nagged in the back of my mind. I had to hustle and “catch as catch can” in the community when it came to finding a job, but the kids in my special education study hall seemed to be having an easier time of it. Why? I suppose I was a bit jealous, even though I did not want to work at McDonald's—which some of them did. Ah, how naïve I was! I did not know about job slots and placements yet.
You see, I found out as an adult that my classmates in special ed were in work programs to help them transition into the labor force once they graduated. The jobs they had were specially designed so that they would occupy a slot at one place of employment, and when they left school, another special student would rise to fill their place. Once I discovered this, I was horrified. Were my fellow students interchangeable parts, interchangeable employees? I disagreed, but I guess the economic realities of my neighborhood, state, and country said otherwise. I suppose I should be grateful the slots are still there, in many cases, for the students who succeed me. Still, I do not believe this employment model is the way of the future.
The next three jobs I obtained, all clerical positions through the Job Training Partnership Act, which was later called the Workforce Investment Act, were slots too.
2001–2004: Queen's Gambit Declined (and Accepted)
My college career was a tumultuous roller-coaster ride that ended in disaster. I attended two universities, at first earning good grades. However, major depression, work overload, trouble understanding my highly difficult Spanish studies, and social isolation took their toll. I flunked out twice, once at each college, and returned home feeling ashamed and disgraced. I had brought a great deal of embarrassment to my family and friends, not to mention myself.
After I picked myself up and dusted myself off, I set out to find a job near home. Knowing that transportation would be a problem, because I could not (and cannot) drive, I tried to apply at workplaces that would not require a long commute for myself and my parents. Sending out dozens of resumes, I was frustrated when I received rejection letters—or worse, no reply at all. The few job interviews I had did not result in employment. In an ironic twist of fate, one of my interviews was with the local special education office for a data-entry clerk position. I did not get that job and to this day I still wonder why.
During this period of increasingly frantic (and increasingly desperate) job hunting, I kept wondering what was wrong with me. Was I not intelligent? Did my potential employers believe there was something lacking in my attitude? Was I not enough of a “team player?” I tried my best! Finally, I was selected as a work-from-home customer service representative who took incoming calls from people ordering tax forms. This job was harrowing, to say the least, especially when callers were angry or wanted me to deliver advice instead of paperwork. Yikes! The worst part, though, was that my performance was almost entirely measured in terms of talk time. I had to keep my calls at two minutes or less, on average, and that was impossible for me (particularly when a customer wanted to order multiple kinds of forms). I got a lot of those calls, and so when it came time for my employers to ramp down (read: downsize) the number of customer-service reps they needed, I was one of the first to go. I was disappointed, but also relieved, when this happened. This was a seasonal job I held for two years, and even though I was glad to earn an income then, I was also glad that tax form season had come to an end.
In the “off seasons,” I had the grand opportunity to be mentored by a close friend of mine who was involved with our county's chapter of the Arc. She and I attended regional meetings that related to the service system for people with developmental disabilities and how it was run. I wanted people such as myself to have more of a voice, and so I kept going to these meetings and speaking up. Eventually, I earned a place on Illinois' Statewide Advisory Council for developmental disabilities.
2005–Present: At Last, a Pawn is Promoted
My doubts remained. I felt like a pawn in the chess game that is the world of employment. People, especially those with disabilities, struggle to find work. They often find they cannot move forward or are placed, like chess pieces, in positions that may not match their interests, goals, and dreams. I wanted something to be passionate about—a cause, not just a job.
I found it when I was given an assignment on the Council: to submit comments and feedback on a proposed combination of the Community Integrated Living Arrangement (a group home which typically houses up to eight people with developmental disabilities) and Developmental Training Rules (Rule 115 and 119). The document was so full of technical language, jargon, and incomprehensible regulations that I stood up in the middle of the Council meeting, threw the combined rule on the table in front of me, and cried, “I have had it! I can't understand this. If you're going to write about us, you're going to have to write for us!” All the people at the meeting were absolutely shocked. So was my future boss!
Luckily, she was shocked in a good way and that was why she hired me. She admired my guts and courage—not to mention the real heart of the matter, which was that people with disabilities should be able to understand paperwork that is written about their lives and services. Because of this bold act of defiance against business (and bureaucracy) as usual, I got a job working on a state-funded grant and self-advocacy project called Illinois Voices. Since 2005, I have supported people with disabilities to reach their goals and dreams, become leaders for organizational and systems change, and fight against injustice, inequality, and discrimination. The dream lives on, as does the position. As in chess, though, it is always a precarious one.
2011 and Onward: Thoughts on the “Employment Endgame”
My questions linger. I have always wondered about the world of work and how people with disabilities belong. These are the employment quandaries that, at times, keep me up nights:
Why is an employment model based on slots and placements considered appropriate—even optimal—for people with disabilities when people without disabilities would reject it? Why are commensurate wages (read: subminimum wages) considered to be fair for some people who have disabilities? Medicaid benefits aside, no one can earn a living on such pay. Sheltered work is segregated, congregate work for which no one else in the community can apply except people with disabilities. Why do there exist pervasive isolation, discrimination, and low expectations? Why is there a loophole in our laws that says businesses do not have to pay for disability accommodations if they cause “undue hardship” (cost too much), according to Johnson (2003). Why is work considered therapy for people with disabilities and employment for everyone else?
If I had an answer to any of these questions (and many more), I would be a multimillionaire by now. However, in the working world, both for people with and those without disabilities, there are no quick fixes and magic formulas that will satisfy everyone. As chess is a game of strategy, of give-and-take and sacrifice, so is the “game” of trying to find and keep a job, which we all play. In this time of high economic uncertainty and job insecurity, all of us are dealing with the fact that in life, there are no guarantees. Who knows where our next paycheck will be coming from, or if we will have the supports and services we need to earn that paycheck and make a difference? Moreover, who knows if the world of work will be ready to support us? We need:
WILLINGNESS from employers, both in the public and private sector, to hire us.
OPPORTUNITIES to do meaningful work, to highlight our skills and talents, and to advance in careers that we ourselves choose—not ones chosen for us by others.
RESPECT from our employers, coworkers, and people who support us on the job.
KNOWLEDGE and resources to help us do our best at work and learn new skills.
Some of you may ask, Why is work so important to people with disabilities? The answer we give is the same one you might: because working makes us proud and confident; provides us with a way to earn a living; and gives us meaning, purpose, and fulfillment in our life. Why do we work? We work not only because we have to, but because we want to. It is part of life!
At the time I am writing this essay (March of 2010), I do not know whether I will have a job come July. My state is in dire financial straits, and the grant funds for which I work might disappear. Budget cuts are a reality in the world of human services, but do they absolutely have to be? Must we, year after year, resign to being considered second-class citizens and second-class workers? I think not. Instead of yielding to the “stalemated” status quo, let's “checkmate” it instead!
Amy Walker (e-mail: email@example.com), Former Systems Change Activist, Illinois Voices, 225 S. Short St., Watseka, IL 60970.