Wednesday, December 26, 2007

A Christmas Message

It’s Christmas Eve and the new snowfall in Minnesota over this holiday weekend has helped to set the mood of the season. For me, it’s been a time for enjoying the blessings of family, friends, and the season’s good tidings. And our four-day holiday weekend is a great time for slowing things down and reflecting on life’s journey. I’ve done just that.
Tonight, CNN, the cable network, ran a holiday special called What would Jesus do? This show examined current political events and queried theologians about how Jesus would handle vexing problems such as war in today’s world. The show was crafted on theoretical principles and it raised interesting questions about current world events with reasoned answers from invited biblical scholars. The fundamental question posed to the theologians was this–How would Jesus tackle our world challenges in 2007?
This show got me to thinking about this concept in my own world. I launched this blog three years ago because I believe we need a new vision about disability and the role it plays in the lives of people affected by it. Of course, my specific area of interest is employment and I’ve spent 34 years searching for practical answers to a couple of complex questions:
  1. Why are people with significant disabilities far more likely to be excluded from competitive employment in the workforce?
  2. And what can a community of interested business leaders and citizens do about it?
During the past three years, I’ve shared a number of professional observations and experiences here. I’ve written about new research findings and emerging practices in the disability, business, and employment fields. I’ve touched on challenges in navigating restrictive disability policies as well as ushering in promising and more proactive legislation. I’ve written about cutting edge innovations in assistive technologies that enhance human functionality and capacities. I am a strong advocate of professional development and training to increase practitioners’ skills in using customized employment strategies. I’ve shared exciting stories about individuals who joined the workforce despite living with significant disability challenges. This is my 90th post today and I have not addressed (at least directly) the area of spirituality.
I recognize this is an uncomfortable topic for many people. And it may be a taboo subject in the arena of public discourse about disability. With that said, it matters. Why? Spiritual beliefs run deep, give purpose, and shape how we think. And how we think gives energy and guidance to our daily behavior off and on the job. I guess it’s not politically correct to discuss these matters so openly. However, that’s the beauty of having a personal blog–I can write freely about a subject without representing the policies or viewpoint of any organization including my own.
OK, let me be clear from the start–I’m no a biblical scholar. And secondly, I have no intention here to convert anyone to a religion. I’ll leave these jobs to more qualified people. Simply said, I thought it would be helpful to share a few things that have taken me a long time to fully comprehend. I wanted to share these lessons learned with a hope that I can save some of you the time in getting there.
I’ll start right here. I graduated from college in 1973 with a Master’s degree in the field of vocational rehabilitation. I was attracted to this work because I believed it was good thing to support people with disabilities to gain their independence by going to work. I will admit my early motivations were driven more by a "caretaking" attitude than the philosophy I hold today. Like many people, I believed that people with diagnosed disabilities drew a "short straw" in life and it was noble work to help them overcome their deficits. The concept of "rehabilitation" made a lot of sense to me back then. I was cool with the idea of helping people in less fortunate situations due to birth defects, accidents, diseases, or injuries so they could find employment and join the rest of us. I also bought into the premise that competitive employment in the workforce was improbable and beyond the reach of many due to challenges associated with complex disabilities. For these folks, we would need other options.
Privately, I struggled with the very concept of disability and understanding the big question. Why would a loving and benevolent God allow some people to be born with disabilities? This is just unfair! As a fledgling rehabilitation professional, it made no sense to me. In my private search for answers, I remember once reading how Jesus was queried about disability by his followers. In a reference to the blindness of a man they encountered, Jesus’ disciples asked Him: "Who sinned, the man or his parents?" Jesus replied to them: "Neither did this man sin, nor his parents: but that the works of God should be made manifest in him." (John 9:3)
Huh? That’s it? Is this the best you can do Jesus?! I confess the answer was unsatisfactory. Of course, I did not understand the answer. I did not have the depth of knowledge or professional experiences that I do today. So here is what I now understand some 34 years later–
First, the very concept of living with a "disability" is man and woman-made. It must be very amusing to a God capable of creating such a vast and magnificent universe that He made a few "mistakes" along the way. Oops! Well, there are no mistakes. Everyone is important. Everyone has a purpose. And everyone counts.
Disability is not a God problem. It’s a problem of humans figuring out how to live together and constructing a society that includes everyone. We are not very good at this. Many of our culture’s primary institutions such as public education or the workplace are not universally designed with everyone’s interests in mind. And so it goes, we need other types of public institutions including buildings, special education programs, or adult disability service systems to care for those who do not fit the mold.
As a society, it is we the people who define what a disability is and is not. Of course, we have crafted a sophisticated lexicon about the "presence" of disabilities based on general population statistics and whatever suits our community needs. Interestingly, these definitions are often arbitrary. And disability definitions are subject to revision to suit our changing public policy needs. To illustrate my point, consider that an I.Q. cutoff point can result in the diagnosis and presence of an "intellectual disability." Further, disabilities are documented through other professional diagnostic testing methods such as identifying specific patterns in brain cognition, mental thought processes, and/or human behavior. In addition, disabilities are diagnosed from medical tests that assess the presence of illnesses, diseases, or physical conditions that separate individuals out from the general population.
Needless to say, there is a wide variation in the characteristics of human behavior, intelligence, talents, aptitudes, and functionality. Indeed, virtually all of us would demonstrate some level of "disability" if a formal assessment was designed to measure specific characteristics or traits we are not especially good at. With this said, we insist on measuring disabilities by using general population norms that often tell us what is wrong about an individual. We are quite good at categorizing people based on their diagnosed disabilities and then segregating them according to these labels. I know it’s a crude way to say this– but there is a philosophical underpinning in rehabilitation that people with disabilities are "broken" in some way and need to be fixed or changed in ways that allow them to fit in with the rest of us. The intent is very good but the end result is devastating.
Despite amazing increases in public research, knowledge, and field experiences, disabilities continue to be widely viewed as aberrations or negative flaws in our human capacities. A more accurate truth is that disabilities are naturally occurring events in life. And a majority of us will experience one or more disabilities either on a temporary or long-term basis if we are lucky enough to live a long life. Whether it’s a minor correction for failing vision or major life changes due to a serious illness, condition, or accident, a high percentage of the general population will experience disability at some point in their lives.
It’s not a particularly troubling question about whether disabilities truly exist. They are quite real if we perceive them, name them, and allow them to filter the quality of our lives. What is critical is understanding and managing disabilities in ways that strengthen us. This means identifying, and creating if necessary, the supports people need to reach the fullest level of human functionality and social integration possible.
Perhaps the most important lesson I’ve learned is this–Jesus was right on when He said "so that the works of God will be made manifest in him." Today, I see disability through a completely different lens. For example, I’ve witnessed firsthand that...
  • People with intellectual disabilities can learn
  • People who are deaf can "hear’ (differently)
  • People who are blind can "see" (differently)
  • People who can’t walk can be mobile
  • People who live with serious mental illnesses can recover
  • People with debilitating physical disabilities can achieve functionality
  • People who are dependent can be more self-reliant
  • People with complex, significant disabilities have and can use their abilities
  • People who are considered "unemployable" can be productive and employable when the right conditions and strategies are used.
And so it goes, we can choose to buy into traditional theories about disabilities and the need for rehabilitation. Or, we can put on a brand new pair of glasses and see individuals through a completely new focus. I’ve learned that disability is simply no match for human creativity if we are willing to change our view of what is possible and stop the pity party.
Said simply, disability is often a function of human attitudes, definitions, perceptions, and stereotypes. The diagnosis of a disability may help many people gain access to public funding and services they need to live a more full life. Alright, that’s fine. And in some instances, a disability diagnosis may help to identify medical, community, and job supports people need to achieve higher levels of competency and social integration. OK, that’s great. But let it end here.
I am no longer a believer in this idea of "rehabilitation." Instead, I am attracted to emerging strategies of customized employment that observe strength-based practices. These strategies do not play into the long-term caretaking of adults with disabilities. Instead, the focus is on promoting integrated employment and social integration of adults who are not benefitting from traditional models of education, training, (re)habilitation, and job placement.
In the end, this means we need to stop trying to "fix" what is wrong with people. As a community, we need to move away from investing in programs and begin investing in individuals. Of course, this means we need a radical shift in the performance expectations of public and private educational and adult service systems that touch on the lives of people with disabilities. It means redesigning education, business, and adult disability service systems to support people in identifying, marketing, and employing their talents in the workforce. Also, it means creating better access to the varied supports that people will need to enjoy the freedoms and opportunities available to all Americans.
Is there a spiritual foundation for moving in this new direction? Well, there is for me. And I don’t think you don’t need to be a Christian to be inspired by what the apostle Paul once wrote: "My grace is sufficient for you, for power is perfected in weakness." (Corinthians 12:9) I don’t know about you but I think we could all benefit right now by cranking up the amps.

Merry Christmas and Happy Holidays to all of my readers!


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