"That the poor are invisible is one of the most important things about them. They are not simply neglected and forgotten as in the old rhetoric of reform; what is much worse, they are not seen."
Michael Harrington (1962)
Nearly 45 years ago, Michael Harrington wrote "The Other America" a book that lifted the heavy veil that made invisible to the rest of the country, the poorest Americans, millions trapped in poverty – outside of public policy, outside of political power and outside of the American dream. Among those millions were hundreds of thousands of people with disabilities – infants, children and adults, seniors and their families. Harrington wrote about the poor in the Appalachians, the shocking hunger of children in the Mississippi Delta, the thousands who toiled the fields as migrant farmworkers in unimaginable conditions, and the isolation of poverty in the inner cities, while discrimination prevailed against people of color, and agains
The book was read by President John F Kennedy and then Attorney General Robert Kennedy and profoundly influenced them – and millions of other Americans since then. The ideas of many critical programs – Medicaid, Medicare, expanded social security benefits, food stamps and more can be traced back to his explosive study on poverty, which, with the civil rights movement, galvanized the nation in the early 1960’s into declaring "unconditional war on poverty".
Much progress for sure has been made since the book was published in 1962. Major civil rights and voting rights acts, creation of Medicare and Medicaid, the federal Americans With Disabilities Act, Individuals with Disabilities Education Act, the Rehabilitation Act, California’s Lanterman Developmental Disabilities Services Act, Unruh Civil Rights Act, the Mental Health Services Act and more were enacted – the work of both Republicans and Democrats.
And yet, now almost a half century later the heavy veil that separates the people who have opportunities from the people who do not, remains, sometimes lifting ever so briefly when indifference is overcome by accountability. There is still in this country, the "Other America", and, in this state, the "Other California".
Hard Choices Not Made For Others
In the "Other California", in bad budget times for people with disabilities, seniors, for low income families, it seems that rights are rationed, and in good budget times, somehow minimized among other worthy priorities. In the "Other California" the State fails to fully enforce the rights that it has an obligation to fulfill, whether it is the right to special education, the right to public accommodations or the right to live independently in the community.
We recognize there limits to funding and resources, limits that people with disabilities and community organizations and workers contend with on a daily basis for decades.
We could understand and respect the reasons of those who make decisions about limited funding and resources impacting people with disabilities and seniors if policymakers in fact would recognize those limits for other groups in other budget areas. But they don’t.
We have no quarrel with those other groups who push hard for higher wages or increased benefits or increased funding for pensions, or other funding. It is their right to do so. But there is a profound disconnect to reality and fairness when the Legislature and Governor approve those requests for increased spending for other groups and other budget areas, and then tell the community of people with disabilities and seniors that there are only hard choices to be made.
If those in the "Other California" were told that the State is broke and has no money, and if then told that the Legislature and Governor did reject salary increases for themselves, for the correctional system, for pensions, and expanding funding in other areas outside the health and human services budget then at least fairness and honestry would be a part of the debate of what hard choices need to be made. But they have not done that. We know, in the "Other California", that in fact, those hard choices were not hard to make because they were never made for others. Last July, the Governor and the Legislature voted to suspend the small cost of living increases for the lowest income people with disabilities and seniors – the most neediest of all in the "Other California" for two years and are now looking at extending it further. California can be better than that.
Denial of Rights and Freedom
Until that time, in the "Other California", it is about denial of rights, and denial of the basic freedom that comes from those rights.
Janis Joplin once sang "freedom is just another word, for nothing left to lose." And it does seem that State and Federal governments view the rights of people with disabilities and seniors in that way.
But freedom is not just a flag, or an anthem or a nation at war. It is not just about the right to religion or speech or words. It is not just a medal or a moment of silence in honor of a brave soldier serving our country. It is also about rights – the right to be a part of this country, to be a part of a community and to have a equal chance and opportunity to education, to housing, to jobs, access to public accommodations, access to needed services that allow people the choice to live in their own homes rather than an institution.
This is a freedom and these are rights that were recognized (not given) decades late, by federal law, by the US Supreme Court , and by state law. I have always believed that the Federal and State governments did not give my sister Alana, who had developmental disabilities, any rights that she did not already have when she was born.
The distinction is important, because in the "Other California", while progress has been made, the promise of freedom and those rights recognized has yet to be fulfilled. The unfulfilled promise goes back further than the moment the Federal or State governments got around to recognizing a right.
For all its hopes and dreams, this is a good and wonderful country and state. But we cannot just talk about freedom and rights in other countries and preach freedom and rights to other people, while people here are not fully free, with rights unenforced or denied in the "Other California". This is not rhetoric or an exaggeration. The "Other California" exists. Like those people trapped in the "Other America" – we wish it didn’t.
The People In the "Other California"
Being invisible does not mean people do not exist even if not seen. In the "Other California" there are over 800,000 people with disabilities, over 21,000 blind and over 350,000 seniors on SSI/SSP (Supplemental Security Income/State Supplemental Income); over 650,000 children with special needs in special education; over 200,000 children and adults with developmental disabilities receiving regional center funded community services; about 3,000 people with developmental disabilities in state operated facilities; tens of thousands of people with mental health needs; thousands each month in nursing homes; over 300,000 people with disabilities and seniors receiving in-home services, over 1.7 million children and adults with disabilities and seniors on Medi-Cal; over 300,000 In-Home workers, over 150,000 people who provide community-based services as front-line staff, managers, or other workers often with low wages. Millions of children and families trapped in poverty.
It is a child with autism, it is the uncle with MS. It is the mother with cerebral palsy, and the grandfather with Alzheimer’s. It is the grandchild with mental retardation, and a son with a traumatic brain injury. It is a daughter with polio and a grandmother who is blind. It is a neighbor with a spinal cord injury and a friend who is deaf and a aunt with mental health needs. It is the worker being paid just barely the minimum wage and the community provider going under financially.
One Community Divided By Disability And Services
We are one community in the "Other California", though often we allow ourselves to be divided by how the State or federal government defines a disability, or allow ourselves to be further divided by funding of a program, divided on whether we receive services or whether we provide them or by those who determine who can receive services. We allow ourselves to be divided by all the things that should not matter with the horrible consequence that it prevents us from uniting on the things that do.
And what matters in the "Other California" is simply this:
If a Californian with disabilities, and their family cannot overcome barriers to a good education that their children have a right to; if a Californian with disabilities, and their family cannot eat in a restaurant open to the public or go into a theater, a park or other public place because of barriers; if a Californian with disabilities and their family cannot vote because the voting booth, location or machine is not accessible; if they cannot get housing, access to health care, and access to transportation; if workers who provide services or supports to Californians with disabilities and seniors cannot be paid a liveable wage; if community organizations cannot receive the funding to cover their costs of providing services that the State is required to do; if school districts are not provided the funding from the state and federal governments to provide needed special education programs; if counties are not given the funding they need to provide necessary supports and services to people with disabilities and seniors – then who in California would be willing to exchange places with any of us and then be willing to listen to those who talk of delay, of hard choices, and more patience? How patient would you be when the State asks you to come up with a new solution, or a new plan or a new way – when they have not kept their word on the promises already made, or enforced rights already enacted?
Too many years, too many decades have passed. The pace is slow and the consequences of continued delay, of broken promises, of suspension rights and laws is enormous and devastating.
In the "Other California", what do we say to those children with special needs and their families when the bus no longer comes for them for special education? What do we say to them about the opportunities and chances that will never arrive for them? What do we say to the thousands of people with disabilities who want to work, and earn their own way, when funding is cut by the State so that can never happen? What do we say to the thousands of people with disabilities who cannot get their wheelchair or other equipment repaired because of budget reductions? What do we say to the thousands of seniors, who have worked hard all their lives only to find that they may have to sacrifice everything they worked for because of a healthcare system that isolates and makes institutionalization almost inevitable? What do we say to the thousands of people who work in community organizations, who struggle hard to pay their rent or mortgage, who work under difficult conditions? What do we say to the thousands of people and their families and friends who want to enjoy the free life that others may take for granted of going to a restaurant, or theater or park, or other public event or place, only to find barriers, inaccessibility and the humiliation of discrimination?
The "Other California" will always exist so long as the when the rights of any California is denied. In the "Other California", it happens all the time.
Funding of Services Not Just A Budget Issue
The funding of services and supports is not just a budget issue. Though some with good intentions often minimize the impact of reductions as exaggerated or unrelated to rights, if you are part of the "Other California", there is no embarassment or hesitation to make the claim that in fact it is about enforcing rights to live in the community – to have choices, and independence.
This is not just rhetoric but the reality of a promise that often seems to conflict with the balancing of a budget. It should not be. Early intervention for a infant with special needs makes a difference. Services to a child with special needs makes a difference. Supports and services to adults with disabilities – to seniors, children and adults with mental health needs – makes a difference. Keeping a promise makes a difference. But it is more than that. It is also a moral issue.
It is morally wrong, for instance, to take away money from the poorest of Californians who have disabilities, who are elderly or blind, when costs are going up – and to instead use that money to balance the state budget, as proposed last year by the Governor and passed by the Legislature as part of the 2005-2006 budget. We don’t need to justify our position beyond that. It is wrong. It is morally wrong. And now another similar proposal is being made this year. It is wrong, especially at a time when elected Statewide officials, and members of the Legislature received a cost of living increase that went into effect in December. It is okay for us to say that – and to say it loud, and say it to the good people in the Assembly and Senate: restore the funding taken away to over 1 million of the lowest income people with disabilities, the blind and seniors, and give the money back. And restore the other cuts, as a first step to reform.
Good People Can Be Indifferent And Also Be Extraordinary
This is not to say that those in State government are evil or reprehensible as human beings or that they do not deserve a cost of living increase. Good people can be indifferent. Good people can do bad things. And good people can do extraordinary things. There have been some good efforts proposed or started by good people from both parties in the legislature, like Sen. Wes Chesbro, Assemblymember Judy Chu, Sen. Deborah Ortiz, former Senate President John Burton, former Assemblymember Dion Aroner, the late Assembymember Marco Firebaugh, and even certain issues by Assemblymember Tim Leslie. There are many others.
The response by the Governor and the Legislature, and by state officials like Stan Rosenstein, with the Department of Health Services, to the mishandling by the Federal government in implementing the Medicare Part D Prescription Drug Program, was swift, powerful, appropriate and meaningful for tens of thousands of people with disabilities and seniors who are eligible for both Medi-Cal and Medicare.
The effort led by Secretary Kim Belshe and others, in the outreach that included people with disabilities and seniors in discussions on changes to Medi-Cal (even when we disagreed strongly with the actual proposals) conducted by the California Health and Human Services Agency and the Department of Health Services, was remarkable. Efforts to look at autism and the pilots implementing self determination by the Legislature and the Department of Developmental Services were good; while the efforts by the Department of Social Services in being candid and open with the In-Home Supportive Services Quality Assurance program has been very positive even when we may not agree with the direction or some of the proposals.
But the pace is slow – and the consequences for that delay is enormous. Too many years have passed for people with disabilities, for providers being strangled for funding, and workers without decent wages for doing work that the State is required to have done by state or federal laws. Children with special needs who are denied needed services at a young age suffer a loss that cannot be replaced and could mean the difference of how a family can cope and stay together. And there is a special humliation and an absolute denial of basic rights for people with disabilities who live in the community and yet cannot be a part of it because it is not accessible either in public accomodations or in supports, services and healthcare.
Keeping A Promise and Enforcing Rights First Step Toward Real Reform
The problem isn’t the lack of good alternatives or solutions – or the fact that the State (including the Legislature) simply needs to be "educated" on the issues. It underscores that what is lacking is not a better proverbial mousetrap – but the political will. Communities of people with disabilities and seniors have long lacked the unified political power to hold policymakers accountable. We are all working to change that in a positive way with an effort called "advocacy without borders" (see CDCAN’s website at www.cdcan.us).
* Keeping a promise and enforcing rights already enacted is the first step toward real reform. No real efforts at new reforms can happen until this step is taken.
* Reform and change should always be an on-going outcome that need not be accompanied by a budget reduction disguised as an "efficiency".
* Real reform can produce good results and savings for everyone.
* The disability rights movement – is all about change, about moving from the status quo, so we will always welcome better solutions, different alternatives that mean more efficient services and supports that are fair and accessible.
It is hard to make a case to those in the "Other California" to come up with new ideas or a new proposal or new efficiencies or new laws – when the State has failed to keep the promises already made, or the rights already recognized, or the laws already passed and enacted.
By reducing funding, freezing reimbursements at levels that do not come close to matching the costs of providing services – the State – including the Legislature has created a "Wal Mart" approach in community based services and enforcement of rights: rights and services for people with disabilities and seniors at the lowest possible discounted price, quality always a gamble, and provided by workers at the lowest possible wages and benefits, creating a workforce of poverty. That isn’t real reform. It doesn’t even make sense money-wise. We owe ourselves and California something better than that.
40 Years Ago and Now: We Are Here To Speak for Justice
Nearly 50 years ago America discovered that there was the "Other America". In that "Other America" – in that "Other California" nearly 40 years ago, groups of parents of children with developmental disabilities came to Sacramento to fight for their rights and said to the Legislature that "we are here to speak for justice". The response then from the Legislature and the Governor was the passage and enactment of the only civil rights act for people with developmental disabilities in the nation – the landmark Lanterman Developmental Disabilities Services Act.
In 2006, some 40 years later, the "Other California" still exists. Some 40 years later, we are again here to speak for justice. We will always be here now. Let the response be from the Governor and Legislature that they will finally fulfill promises already made and enforce rights already enacted and bring down the divide that separates those in the "Other California" from the dream and hopes that every Californian wants to believe in.
MARTY OMOTO is director of the California Disability Community Action Network.