When Katie Lieb, who happens
to have Cerebral Palsy, was celebrating her seventh birthday, I began talking with friends and family members about the fact
that she would need to be welcomed into the world of work when she left school at age twenty-one. I began asking: "Who will
need to know her, and what kind of experience will they need to have with each other so that someone in our circle will offer
her employment when she leaves school? What do we need to be doing together over
the next fourteen years for this to happen?” Or “Should I prepare
a place within the family business for her?”
A 'great question' is
a question that refuses to be answered, so it keeps leading us into deeper thinking and deeper connections with each other;
I wanted to ask a great question, and I was trying to ask it of the right people.
Think about the old nursery
rhyme, 'Here is the church, here is the steeple, open the door and see all the people'. Well, all of the people in our circle
of acquaintances – in fact every one of the people in Katie's life – are connected to something during the daytime. They all go somewhere during the day. I figure if the people in our circle start talking
about Katie's future, and I keep asking the question for the next fourteen years,
we can probably figure out how people can welcome her into the places where they work, or volunteer, or do their art, or their
music, or play or add to the community in other ways.
I knew that it was important to do a good
job with our personal community – not with 'the community' at large, but with the people who knew Katie, who loved her,
and who knew that she would be part of their futures, forever. We knew that if
we did the right kind of work, she might have a chance at being independent of the system.
A small amount of formal support – money, technology, or job adaptation – could support a much larger commitment
from our friends, but Katie’s future wouldn’t be dependent on the operation of the system.
Through our planning, Katie will be as independent
as she can possibly be. Through our persistence, guidance and the connections of friends and mentors Katie is on her way to
a successful, functional and fulfilling life. I ask her if she is disabled and she responds “no”. It’s amazing
to see her achieve what was said to be unattainable; she with the least ability, accomplishing the greatest tasks.
This was possible because we assumed
a proactive approach in caring for Katie.
We knew that the ‘system’
does not do a very good job of planning for these young men and women as they approach high school graduation – somehow
they are not well 'planned for' or 'budgeted for' on their way into the adult system.
Most families, for twenty-one years are systematically convinced that their children's futures
will somehow emerge from the service system. They are told that the most important
work that they can do as families is to pay attention to the interface with that system – educating, challenging, advocating,
and hoping against hope that the system will do its job when their sons and daughters emerged from school.
Most
importantly, it means that complete circles of friends, extended family members, educators, members of church congregations,
colleagues at work, schoolmates and neighbors, mentors – literally hundreds of people – will never be asked to
think about what they might do to welcome these young men and women who they already know, into the world of work. A great opportunity will be missed.
It is that first job that
will lead to the next, which will then lead to a whole series of experiences that will shape the future for our special needs
child.
Within Katie’s circle came her first opportunity at age seven. Unpaid but not unappreciated,
Katie was featured in a television commercial. This led to a whole series of experiences that took her to the White House,
Disney World, radio, newspapers, membership in the Screen Actors Guild (SAG) and finally at age fourteen paying work as a
professional actor, all without speaking a word with her own voice.
That first simple question; “Who needs to know Katie”, provided Katie with the
opportunity of a lifetime. This simple question can reveal and engage an enormous amount of community capacity, hospitality,
creativity and opportunity.
Community creates success for our children, not dependence on the operation
of the system.
