Newsletter – April, 2004

**Companion Resources Newsletter**

edited by Paul D. Leichty

Volume 6, No. 4 April 2004

Employment is a major factor in how society defines the individual person. When we meet a new person, it is almost inevitable that one of the first questions after learning the person’s name is “What do you do?” The question asks about a person’s job, about what he or she does “for a living.”

Thus, it is an important part of community life and becoming a “normal” functioning member of society for a person with disabilities or mental illness to seek and get a job. A good job raises self-esteem and helps a person feel like he or she is contributing to the community.

Yet, stories abound of the painful realities that persons with disabilities experience when they get out into the workplace.

* A young man with attention deficits has difficulty staying on task in a stimulating fast food restaurant.

* A woman with mental illness is the first to be accused when money is missing from the cash drawer.

* A man with moderate cognitive difficulties is found staring at the walls, prompting a “medical” leave. Is it “laziness,” a growing loss of cognitive function, an impending mental illness, or seizure activity in his brain?

* A college-educated man’s mental illness prevents him from being out in public. Yet, it’s hard to find computer work at home that rises above the level of a scam and truly benefits the worker.

For many years, the solution to the unemployment and need for day activities, particularly for persons with developmental disabilities, has been the sheltered workshop. “Segregated employment” is the new term that is often used. The clear connotation is that segregation of persons with challenges in the work force is no more right than segregation of persons by color in the area of housing.

At the same time, we have an example in our own household that seems to turn the tables on conventional thinking. We’ve spent six years of struggling through the bureaucracy of Vocational Rehabilitation, the waiting of job development, and the adjustments of a new job. We’ve endured tensions with job coaches and expectations from employers that doing one task well means that another similar one can be quickly assigned. We have also dealt with the pain of suddenly finding oneself “fired” or even “laid off,” ripped from a familiar routine.

Now, our son is in a “sheltered” environment, a “resource room” intended to prepare him for a job. And he loves it! He’s not there all the time; a worker takes clients out into the community in groups of two or three for volunteer work, shopping, and recreation. The work is on a volunteer basis and in manageable chunks. The routine is fairly predictable, and the environment is safe. What would motivate someone to leave such a comfortable setting and subject himself again to the anxiety of something that is unknown, competitive, way too stimulating, stressful, and carries with it expectations that are just barely understood? It’s going to take a lot to get over that hump, let me tell you!

Is it worth it? Whose goal is it for our son to have a “real job” with take-home pay? It certainly isn’t his goal! Who says that a person isn’t truly fulfilled unless they have a job “out in the workplace”? Why do we insist that a person isn’t succeeding in the workplace unless the job coach can be withdrawn and he can function on his own?

Don’t get me wrong. I would love to see our son with a paying job that he loved! I believe with all my heart that there is a real place for him in the world of work. But I feel sad and angry when I realize that our society as it is now structured will throw up hundreds of roadblocks in the name of process, competitiveness, multi-tasking, lack of funding, and, of course, “the Almighty Dollar.” This is a daunting maze for “normal” people. Why would one trade friends and familiarity, safety and comfort, to jump into that lion’s den?

I recently ran across the website of APSE: The Network on employment ( APSE stands for the Association for Persons in Supported Employment. The website explains that “supported employment (SE) enables people with disabilities who have not been successfully employed to work and contribute to society. SE focuses on a person’s abilities and provides the supports the individual needs to be successful on a long-term basis.” APSE is a membership organization that seemingly started out for professionals in the field but now includes managers, families, advocates, and even consumers themselves.

I like the goal of APSE to eliminate segregated employment and focus government and community resources on supported employment in the larger community. I believe that is ultimately what builds community and enables all of us to appreciate and enjoy the unique gifts and abilities of persons who normally get labeled as “disabled.”

Yet, the resources are not there to approach this goal. Case workers and job specialists come and go. The best ones have case loads that are far too big. There is too much pressure to train quickly and withdraw the “supported” part of supported employment. And employers are under too much pressure to cut costs and maximize productivity.

The annual conference of APSE proclaims that we are “At the Crossroads” and that the challenge before us is for “Advancing Employment in a Changing Landscape.” Maybe this is a frontier for community builders, to work at changing the landscape in ways that are inviting to persons like my son. My fear is that it means just the opposite, that we’re going to continue to need creative funding, creative methods, and creative coaxing to force the person with disabilities to fit into an increasingly competitive and chaotic society.

So in the midst of both the ideal and what works for our family, I will continue seek the best for each individual while continuing to advocate for a world in which persons with disabilities and mental illness will have a natural place for safe and meaningful work in the context of community. Let’s not simply accept a changing landscape that adds more pressure and competition. Let’s change the landscape by building the kinds of communities that demonstrate human values.

As always, your comments are welcomed. Blessings to all of you at your crossroads!

Paul D. Leichty

Phone/Fax: 1-877-214-9838 (toll free)

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