All People Must Work
Every person needs to be needed. This has always been one of my strongest beliefs. The need to be needed may be as important as the need for food, clothing and shelter. The need to be needed may be even greater than our need for love. For many people, work is the primary way we get to feel needed. Work brings meaning to life, provides a social connection, can be a pleasurable and fun experience and, of course, is the linchpin to building an economic future for one's self and one's family. Yet most people with disabilities do not work. Many people with disabilities do not work not because of physical, mental or emotional constraints, but because we are literally not allowed to work.
To understand my passion for work, it’s important to know that my parents are Holocaust survivors. During the war, people with disabilities in ghettos and concentration camps who were unable to work, were instantly killed because they were seen as worthless; having no value. Work was the only way to survive. As a child with Cerebral Palsy, my parents were fearful for my life and did all they could to foster my self-reliance. My mother woke me at 5:30 each morning and would insist I dress myself, even though it took 2 hours to do so. At night, I’d get 2 dinners. One dinner I had to feed myself. I’d spend so much energy feeding myself that dinner, I’d be more hungry after I ate than before. Only then would my mother feed me the second dinner. Since walking symbolized normality, my parents did not allow me to use a wheelchair until high school. This forced me to walk, which was slow, difficult, laborious and consequently not very practical. These tasks may seem extreme today, and today I know that a key to independent living is knowing when and how to get assistance. However, through my efforts to succeed in these tasks, I learned the value of hard work. I also learned that determination and perseverance are the tools to achievement!
Throughout my work career, work has been the major way I defined myself. Regardless of whether it was my first job as a pool-hall cashier at my Alma-mater (Hofstra University), or my last job as a Senior Vice President, IT Manager at Wells Fargo, work is one of the main ways that I felt I contributed something to this world. Whether I was a security guard on graveyard shift at the dorms in college, or the Executive Director of the Computer Technologies Program (CTP), a computer training program for people with disabilities which I co-founded in 1975, working always made me proud. It gave me a sense of purpose.
Working is also one of the best ways to feel and be accepted. My disability is very obvious. I can’t sit upright (sitting in my powered wheelchair, I'd never be considered a role model for good posture). I have involuntary movements and my speech impairment is significant. At Wells Fargo, I loved rolling into meetings where people did not know me. The tension in the room was so thick you could cut it with a knife. At first, no one would make eye contact, but as the meeting gained momentum, there was a great sense of relief when the team began to focus in on my ideas rather than my disability. At times, people struggled to understand my speech, but there was always someone in the group who could help interpret and communicate for me. Inevitably, by the end of the meeting, I always found myself chatting with folks and feeling like part of the team.
Having people with disabilities at work often results in innovation, creativity and an overall better work environment. As a teacher at CTP, my students gained confidence in understanding the subject matter by having to help each other understand my speech. At Wells Fargo, I often marveled at how quickly computer operators learned to ask good yes or no questions when they called me in the middle of the night. I still remember how, in the early ‘80’s, before online computing, Wells Fargo dispatched an armored truck at 2am to bring me, and my non-collapsible wheelchair, to the data center to fix a system’s problem. Work is also critically important to the economics of disability. Perhaps the biggest disadvantage of having a disability is that it is very expensive! We are aware of the high cost of health care. We often forget about the high cost of Personal Assistant Services. The cost of hiring a personal assistant for varying levels of care adds up quickly. For a person with a “high-cost” disability who is unemployed, the government pays for the cost of the personal assistant along with other disability benefits and subsidized housing services.
Since my childhood in the 1950's, the unemployment rate for people with disabilities has always been above 70%. Laws including the Rehabilitation Act of 1973 and the Americans with Disabilities Act (ADA) of 1990 have made this country much more accessible and accepting. However they have done nothing to improve employment. As co-Vice Chair of the President's Committee of Employment for People with Disabilities during the Clinton Administration, I witnessed many staff and committee members work endlessly, but unsuccessfully, to get more people with disabilities employed. An enormous amount of time, energy and money have been spent by government agencies and NGOs in an attempt to improve employment opportunities for individuals with disabilities, to no avail.
After 29 years of working for Wells Fargo, I retired to start a disability-focused employment company that specializes in staffing and placement. Abilicorp was founded to improve employment for people with disabilities in a business-like fashion rather than through charitable and government agencies. It was designed to be a contracting firm, finding people with disabilities to fulfill job demands, instead of an agency searching for places that would hire their clients. For various reasons, including unfortunate timing which coincided with the recent economic downturn, Abilicorp, also, was unsuccessful.
As a result of my experience with Abilicorp, I now believe, more than ever before, that there are systemic problems which intrinsically inhibit people with disabilities from working and being productive. Our society holds very low expectations for individuals with disabilities. Our government's defining of disability as the 'inability to work' in order to receive disability benefits is an inherent disincentive. The continual pleading with employers to hire people with disabilities who usually have less work experience than their peers, portrays us as needy individuals. The ever-present view that people with disabilities always need something while ignoring the basic need to be needed inevitably leads to poor self-esteem. These currently accepted mores and practices must change! I am dedicating the rest of my retirement to see that they do change. Towards that goal, I helped create The World Institute on Disability's Center on Economic Growth (CEG) in 2011.
WID’s CEG measures success as creating a level playing field where people with disabilities have the same employment rate, earning power and asset-building opportunities as their non-disabled peers. Those of us representing the CEG believe that until government invests in the success of people with disabilities, rather than continuing programs and practices that relegate people with disabilities to a poverty position, people with disabilities will remain unemployed, underutilized and undervalued. We believe that now is the time to change the paradigm of how we think about economic growth for people with disabilities. As entitlements continue to be questioned and their funding becomes more tenuous, we must embrace the belief and create the reality that people with disabilities are equal members in our society and full economic partners. We must change our mindset from providing disability benefits and safety-nets, to providing what it takes to enable people to successfully fulfill their role in the economic growth of themselves, their family and their extended community. Economic success for people with disabilities should be defined exactly the same way it is for everyone. Economic success is taking full advantage of opportunities one can find or create that uses one's abilities to be as productive as one can be and as prosperous as one wants to be. The return on investment of this paradigm shift can be both significant and measurable.
WID's CEG has been collaborating with the National Council on Independent Living (NCIL) in developing the ACCESS Program (Adult Coaching, Counseling, and Employment Support Services). We will soon be working on getting Congress to pass legislation enabling us to demonstrate how the Access Program can replace the current Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI) programs for young adults with disabilities, ages 18 to 30, in 5 states. The Access Program is being designed to eliminate work disincentives, promote employment and expect participants to be as productive as they can be. Instead of a check compensating them for their inability to work, participants will receive a stipend to offset their high cost of disability. Every participant will be expected to develop and follow an Individual Career Plan (ICP). Tasks on the ICP may include activities such as:
- being employed
- starting businesses
- attending school
- attending training programs
- attending rehabilitation programs
- attending day programs
- pursuing personal enrichment goals
- understanding what supports and accommodations are available
The Access Program will also coordinate all services the young adults with disabilities need to successfully perform their ICP. For me, the Access Program represents the greatest chance I have of completing the number one thing I have on my bucket list – to increase the employment participation
rate of people with disabilities to an equivalent rate of the general population.
rate of people with disabilities to an equivalent rate of the general population.
The Disability Movement has historically been about changing paradigms. Growing up in the 50’s and 60’s, the predominant paradigm regarding disability was that people with disabilities had to “adjust to their environment”. Our goal was to look and sound and act as ‘normal’ as possible. It wasn't until the paradigm changed and we realized that ‘society should be accessible to all people’ that true progress began to occur. Surprisingly, the predominant paradigm in regards to employment of people with disabilities has not changed. We still hear “hire people with disabilities”, and “people with disabilities can work.” In this global economy, when employers know they can hire very qualified and experienced people anywhere in the world, expecting them to hire people with disabilities will only get harder. As a retired senior vice president of Wells Fargo Bank, hearing that ‘people with disabilities can work’, is demeaning and patronizing. The crux of the problem behind the employment of people with disabilities lies in these antiquated constructs. The paradigm for the 21st century should be that everyone must be productive. Now is the time to raise expectations, to determine how we will be productive, and determine how we will create our own prosperity. This is how we can fulfill our need to be needed.