THE RISE by Terry Kozloff
Over the next while, this column will be regularly devoted to the thousands of people who are at the center of the
rapid rise of a civil rights movement for people with developmental disabilities, their families and the people who love,
support and serve them. This movement is rising to a loud and massive call to oppose the increasing, abysmal
injustices against people and those who care.
With the passing of the Individuals with Disabilities Education Act (IDEA), and the Americans with Disabilities Act
(ADA), Congress for thirty years has directed people to change their views about the value of people with disabilities
in public education and in the world.
We have so much farther to go.
In good economic times and in bad, people with disabilities, babies born to poor families, children and the elderly are
not priorities. It is the same everywhere.
Now, massive deficits loom for years to come. Staggering and inevitable cutbacks in government spending put the
most vulnerable first on the governmental hit list, along with those who have fought all their lives for freedom and
dignity.
This is about the people with disabilities who cannot afford a 37-cent stamp to send a letter to a loved one. This is
about the people who live in group homes staffed by underpaid, overworked employees and rooming with people they
do not know or choose to live with. Someone else chose for them, for good or bad.
This is about the people whose wheelchairs are in disrepair, leaving them hardly mobile anymore – if at all, and
others who need assistance in their homes to get in and out of bed and to eat meals everyday. This is about the
people who want to work but cannot because transportation is unavailable or because Social Security limits their
income.
This is about the children the public schools do not want.
This is about the poorest, the most underemployed and the least valued segment of society. Now they are told they
must give more.
This is about the executive directors of non-profit organizations and operators of group homes who value the people
with disabilities they serve. They have developed model programs of support against the odds, but their liability and
worker’s compensation premiums have doubled or tripled while states continue to renege on their commitment
because the economy is poor. Fundraising has become more competitive and fewer places are there to tap.
What do governmental decision-makers think when they tell their people to move numbers from the “services for
people with disabilities” column to the one that says “fill the deficit”? What do they say as they cut people out of their
very lives?
Do they say, “Oh well, too bad?”
Instead of pondering any longer the morality of these horrors, people are beginning to rise. Their human spirit is
virtually all that remains and this power is all we’ve got to save the day.
It’s the power of the spirit within the self-advocacy movement (people with developmental disabilities) that banded
together decades ago because they want to be “People First”. They want to work alongside providers of service, line
staff, advocates and professionals who have been over-paperworked, under-paid, over-regulated and under-
appreciated for their service for years. It’s the power of families whose spirit we almost lost because they have been
overburdened with lack of healthcare, educational support or help so they can just get a break now and then.
This is the civil rights movement I am talking about.
We shall not stop until we gain our rightful place in society. We will live through great trials and tribulations, and gain
new friends along the way. We will learn to sit beside old adversaries and shake their hand, challenge old ways of
thinking in ourselves and in others, and learn to strategize differently and more creatively than before, because we
must.
On this journey, we must never forget the roots we come from.
In the past one hundred years, society has tortured, neglected, tested, institutionalized and murdered people with
disabilities in the name of research and progress. It was disguised in many different forms – eugenics, attitudes and
vaccines.
It was the parent groups huddled around the country starting in the 1930’s to improve the welfare of their children
with disabilities. They brought to children opportunities for an education, and living in their home communities.
Their memory and the sacrifices they made deserve better recognition than what we have accepted for too long.
Their vision for their own children allowed me to have a vision for mine.
Now in honor of the parents and advocates from decades ago, we charge ourselves with doing things differently than
ever before. We must be ready to take responsibility for the morality of decision-makers – together. To place blame
on parents, providers or social workers for the condition we are in - or to ignore the voice of the very people whose
life is at the heart of this movement, is the old way. To take responsibility is the new way.
If we do not, we will fail.
The economic crisis is a rally cry, not the same soft-pained cry barely audible in recent years. No longer do we have
to be powerless, looked upon with suspicion, or ignored - but invigorated by our common drive to build the pressure
that will make the change we long for.
But remember that others are fighting for their lives as well.
Mostly, I think of the children – the poor, the unwanted, the unhealthy, the starving children. Always remember them.
Over the next while, this column will be regularly devoted to the thousands of people who are at the center of the
rapid rise of a civil rights movement for people with developmental disabilities, their families and the people who love,
support and serve them. This movement is rising to a loud and massive call to oppose the increasing, abysmal
injustices against people and those who care.
With the passing of the Individuals with Disabilities Education Act (IDEA), and the Americans with Disabilities Act
(ADA), Congress for thirty years has directed people to change their views about the value of people with disabilities
in public education and in the world.
We have so much farther to go.
In good economic times and in bad, people with disabilities, babies born to poor families, children and the elderly are
not priorities. It is the same everywhere.
Now, massive deficits loom for years to come. Staggering and inevitable cutbacks in government spending put the
most vulnerable first on the governmental hit list, along with those who have fought all their lives for freedom and
dignity.
This is about the people with disabilities who cannot afford a 37-cent stamp to send a letter to a loved one. This is
about the people who live in group homes staffed by underpaid, overworked employees and rooming with people they
do not know or choose to live with. Someone else chose for them, for good or bad.
This is about the people whose wheelchairs are in disrepair, leaving them hardly mobile anymore – if at all, and
others who need assistance in their homes to get in and out of bed and to eat meals everyday. This is about the
people who want to work but cannot because transportation is unavailable or because Social Security limits their
income.
This is about the children the public schools do not want.
This is about the poorest, the most underemployed and the least valued segment of society. Now they are told they
must give more.
This is about the executive directors of non-profit organizations and operators of group homes who value the people
with disabilities they serve. They have developed model programs of support against the odds, but their liability and
worker’s compensation premiums have doubled or tripled while states continue to renege on their commitment
because the economy is poor. Fundraising has become more competitive and fewer places are there to tap.
What do governmental decision-makers think when they tell their people to move numbers from the “services for
people with disabilities” column to the one that says “fill the deficit”? What do they say as they cut people out of their
very lives?
Do they say, “Oh well, too bad?”
Instead of pondering any longer the morality of these horrors, people are beginning to rise. Their human spirit is
virtually all that remains and this power is all we’ve got to save the day.
It’s the power of the spirit within the self-advocacy movement (people with developmental disabilities) that banded
together decades ago because they want to be “People First”. They want to work alongside providers of service, line
staff, advocates and professionals who have been over-paperworked, under-paid, over-regulated and under-
appreciated for their service for years. It’s the power of families whose spirit we almost lost because they have been
overburdened with lack of healthcare, educational support or help so they can just get a break now and then.
This is the civil rights movement I am talking about.
We shall not stop until we gain our rightful place in society. We will live through great trials and tribulations, and gain
new friends along the way. We will learn to sit beside old adversaries and shake their hand, challenge old ways of
thinking in ourselves and in others, and learn to strategize differently and more creatively than before, because we
must.
On this journey, we must never forget the roots we come from.
In the past one hundred years, society has tortured, neglected, tested, institutionalized and murdered people with
disabilities in the name of research and progress. It was disguised in many different forms – eugenics, attitudes and
vaccines.
It was the parent groups huddled around the country starting in the 1930’s to improve the welfare of their children
with disabilities. They brought to children opportunities for an education, and living in their home communities.
Their memory and the sacrifices they made deserve better recognition than what we have accepted for too long.
Their vision for their own children allowed me to have a vision for mine.
Now in honor of the parents and advocates from decades ago, we charge ourselves with doing things differently than
ever before. We must be ready to take responsibility for the morality of decision-makers – together. To place blame
on parents, providers or social workers for the condition we are in - or to ignore the voice of the very people whose
life is at the heart of this movement, is the old way. To take responsibility is the new way.
If we do not, we will fail.
The economic crisis is a rally cry, not the same soft-pained cry barely audible in recent years. No longer do we have
to be powerless, looked upon with suspicion, or ignored - but invigorated by our common drive to build the pressure
that will make the change we long for.
But remember that others are fighting for their lives as well.
Mostly, I think of the children – the poor, the unwanted, the unhealthy, the starving children. Always remember them.
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