I should decide who touches me in bed...
but the Obama Department of Labor says it's their decision!
TAKE ACTION NOW!
As a law student I have learned that while our U.S. Constitution does not contain an express right to privacy, our nation and the Supreme Court of the United States have found that Americans do have a right to privacy. In fact, in 1992 the Supreme Court stated that "It is a promise of the Constitution that there is a realm of personal liberty which the government may not enter."
But now the Department of Labor is breaking that promise and entering a realm of personal liberty which the government may not enter - our bedrooms! The Department of Labor - under President Obama - has decided that it should regulate who touches people with disabilities in bed instead of allowing people with disabilities to make that decision for themselves by proposing rules that would require us to bring strangers in our homes and our bedrooms.
The Supreme Court has consistently found that Americans have right to privacy in the bedroom. In Planned Parenthood of Southeastern PA v. Casey and in Lawrence v. Texas, both cases involving personal decisions made in the bedroom, our Supreme Court stated:
"These matters, involving the most intimate and personal choices a person may make in a lifetime, choices central to personal dignity and autonomy, are central to the liberty protected by the Fourteenth Amendment. At the heart of liberty is the right to define one's own concept of existence, of meaning, of the universe, and of the mystery of human life. Beliefs about these matters could not define the attributes of personhood were they formed under compulsion of the State."
For people with disabilities, deciding who your attendants are, how many attendants you have, who sees you naked, who helps you shower, who cleans you up when you use the toilet, and whoprepares you for sexual activity are all very personal choices that are central to our personal dignity and autonomy. The Fourteenth Amendment should protect the liberty of people with disabilities, just as it protects people without disabilities. At the heart of our liberty is the right to define our own concept of existence, including who assists us in our most personal matters. Our personhoods are stolen from us when choices about who assists us are made under the compulsion of the Department of Labor.
Not only is the Department of Labor violating my right to privacy, it is also violating theExecutive Order that President Obama signed in January 2011 that sets the expectation that government agencies will "seek the views of those who are likely to be affected" by new rulemaking. Despite this explicit requirement in the Executive Order, the Department of Labor never worked with the Disability Community, including people with disabilities who use consumer directed personal assistant services.
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Even though the Department of Labor didn’t work with the Disability Community, they did work closely with other groups - like PHI and the National Employment Law Project which are strong supporters of the rules. PHI is mentioned about 30 times in the proposed rules and NELP is mentioned seven, either in the text of the rules or in the footnotes. Conversely, the Department of Labor did not reference ANY of the major national disability organizations. As you read this, you might think that the Department of Labor simply forgot to mention the disability groups they worked with, but when you analyze the proposed rules, it’s clear that wasn’t the case.
The fact that the Department of Labor didn’t engage the Disability Community is obvious when it describes consumer directed services in the proposed rules. They note that "There is no consolidated source of data on state consumer-directed programs." Really! Apparently, staff at the Department of Labor are unfamiliar with this amazing resource called "Google".
Of course, they could have also called a Center for Independent Living and gotten the information the needed. Center staff are very familiar with any number of disability organizations around the country, which would be excellent sources of information on consumer directed services, including theNational Council on Independent Living and ADAPT.
The only explanation for the omission is that the Department of Labor deliberately excluded the Disability Community from the process!
Advocates for this rule were well aware that the Disability Community had concerns about this policy direction. Disability groups in New York have expressed concerns about implementation of the Coke decision. Other national disability organizations had raised concerns about federal legislation which would require overtime pay. So, instead of seeking information from these organizations and the Disability Community which has a wealth of information about these programs but would also raise legitimate concerns, the Department of Labor relied on PHI to provide its analysis of the program. That way they could avoid needing to deal with the concerns the Disability Community had.
By not engaging the Disability Community in a dialogue about this important issue that will affect the lives of many people with disabilities in the most personal ways, the Department of Labor has not only violated the Executive Order, but also made a huge mistake. They ignored a long history that has clearly illustrated that people with disabilities are the best experts on how to assist people with disabilities.
While earning my master’s in Disability Studies, I have read over and over again about how people with disabilities are in the best position to direct the assistance that we receive. The first Independent Living Center in the nation was created and directed by people with disabilities. The Americans with Disabilities Act was written based on the personal stories of injustice and discrimination that people with disabilities faced. The model of consumer directed services was developed by the Disability Community. It is a proven fact that the best outcomes are achieved when people with disabilities are involved in the process. Beyond proven fact, it is also just common sense – our input is vital because the rules will crucially affect us.
I feel that the Obama administration is treating people with disabilities differently than it would treat any other group. Would the administration have developed rulemaking directly affecting African-Americans without engaging them? Can you imagine the administration pursuing rules that would affect the right of women to make decisions about their bodies without engaging ANY of the women’s organizations? Of course not! That’s why this is not only wrong – it’s utterly offensive!
Now, to be clear, I don’t use attendant services. Not yet. However, I am realistic about what the future will hold and understand that it is very likely I will need attendant services. Right now, without attendant services, I decide who can come into my bedroom. I decide who touches me in bed. In the future, when I need attendant services, I should be able to still make those decisions. For the Department of Labor to make those decisions for me without my consent is criminal.
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