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of Wisconsin at Whitewater, has a very rare condition called flbrodysplasia ossificans progressiva or f.o.p. that she shares
with approximately 70 other people in this country; it is an
Inborn biochemical error that affects their muscles, but has no
negative impact on their intelligence. Her condition was diagnosed when she was three weeks old. Very early in the grieving process, I realized that the only way I could ever really help our child was to help all people with disabilities; that as a member of a tiny minority within a vast minority, she could never be heard, but that as a member of that larger minority, she could be heard and could also be benefitted. It was one of the very best decisions I have ever made. I am proud to be a disability rights advocate and to share in the pursuit of our common goal independence with dignity and equal participation in all aspects of society.
Every parent tries to look ahead and help their children prepare for their futures. Our major concern for Margaret has always been her long-term future. Our hopes and expectations for Margaret are no different than for her two sisters. The general public, as well as many professionals, do not however, share our high expectations for most people with disabilities. As she grew up, we all constantly encountered the 'great mytho -- that people with disabilities are not quite human, that they cannot function
adequately or appropriately by themselves, etc. and more or less learned to live with it, mostly by ignoring it. Hor
friends, however, who only encountered it when with Margaret,
were often angered by the general public attitude toward her.
Through the years Margaret has been the object of
discrimination in many ways and venues, but perhaps the most
despised have been the low -- even absenti expectations of some of her teachers, the very people society has charged with the development of our children. Too often her presence was simply tolerated because the law required that she be served. I do not mean to condemn the teaching profession for poor
attitudes, but their attitudes toward students have been proven
to be vital to the success of their students. They are reflective of society at large, but have a far more serious impact on children. Many teachers simply told me not to worry about her, that she was very smart and got everything. They failed to understand that we were at odds with their
stereotypical thinking, that we had great expectations for all of our children.
The inevitabl. result of these side effects of
mainstreaming, the downside, was a perfectly dismal performance her first two years at the University. NOW that she understand.
these dynamics herself, she is doing well and fully expects to graduate this June.
Margaret is among the earliest graduates to have benefitted from Public Law 94-142, the Education for all Handicapped Children Act, which became effective when she was in grade school. Soon she will be seeking employment and she expects to find access and accommodation in the adult world at least to the degree that she has experienced it during her education. Millions of children with disabilities have benefitted directly from the services, therapies, transportation, etc., provided to them and their families by PL 94-142. These kids have been integrated into the school with their nondisabled peers, as the Act intended; they will of course expect to be integrated into the community and the adult world in the same nondiscriminatory
Now they expect to become employed, to work as hard as
everyone else, to benefit from being employed, and to pursue their own independent lifestyle just as you and I do in the community. As her parents, we also have the same expectations that with her talents and skills, she will be able to find and keep a good job and enjoy all that her community has to offer.
However, barriers do exist.
There is an enormous need for
barrier-free public accommodations ;
these are the barriers that
Impact most heavily on the family unit and prevent families from participating in normal public events, civic activities, voting, community affairs, and other regular activities like shopping, movies, entertainment, sports, etc. Our family has fared better than most, in many ways because we live in a state with strong laws on the books. Margaret was able to get a summer job when she was 16; she was well accommodated on the job. Many businesses, both small and large, have made these simple accommodations without going bankrupti In addition, many public accommodations have removed architectural barriers without great cost. As an advocate, however, I am aware that in too many other states families do not share our experiences. The ADA would cure
this inequity for families.
Margaret has been extremely fortunate in many, many ways not the least of which is her father's financial success, but our
family is by no means typical. According to Toward Independence", the Census Bureau reports that a household/family that includes a person with a disability is twice as likely to fall at or below the poverty level as a household/family without a person with a disability. Margaret has been fortunate to survive.
Although the condition itself is nonfatal, its complications often are. Margaret is fortunate to have a superior Intelligence and excellent communications skills both
written and oral. Margaret 18 fortunate to have grown up in a stable family unit with siblings and two parents. Indeed, Margaret 18 uniquely fortunate to have been born with so many advantages -- with or without the disability. Even so, she still must endure the physical and attitudinal barriers of our society. She may always be stared at, rebuffed, ignored, and otherwise mistreated by the general public. We cannot legislate good
manners or sensitivity to others, but we can insure that she and
all other people with disabilities are given equal treatment and the opportunity to participate in the workaday world.
On behalf of all parents, I implore you to consider the future of our children: give them an equal chance to succeed;
remove these barriers to their success.
On behalf of my daughter
and of all those individuals with disabilities who do not have
her advantages, I urge you to pass the Americans with Disabilities Act of 1989 so that they may each have a better
chance to achieve equal participation in society and independence
Thank you for this opportunity to present these views on
behalf of our community who seek their own empowerment, their
equal opportunity to participate, their own place in the sun
to contribute to a better future for all of us.