Dear Senator Gillibrand, you are a fierce advocate for bodily autonomy, and as Disabled women, we agree that when policy in the United States denies us control over our bodies, it denies us control over our lives. In such circumstances, we are no longer full citizens.
During an impassioned defense of abortion rights, you called on men in the United States to imagine that how they would feel if they had no bodily autonomy. You said:
“I would like to speak to America’s men for one minute. Imagine you do not have authority over your own body for 10 months… I don’t think a man in America could actually imagine not having control of his body, his bodily functions, what happens to him, and what life would be like for 10 months. I do not think that 50 percent of America should be told that they have to put their bodies at risk of life or death without their consent. It is barbaric, it is inhumane, it is unacceptable, and I hope every human being in this country understands that when you take away a woman’s right to make her decisions about her health and wellbeing, she is no longer a full citizen. She no longer has freedom, she no longer has bodily autonomy, she no longer has basic civil rights or civil liberties. That is what this decision would do in America today.”
Senator Gillibrand, you are absolutely right. Denying the most fundamental freedoms to any percentage of us is absolutely wrong. But frankly, that’s what you are doing to Disabled women through your own inaction – despite multiple contacts to your office. Although you are fiercely defending our right to bodily autonomy in regard to our reproductive rights, you have failed to cosponsor legislation – The LaTonya Reeves Freedom Act (S.3417/H.R.6860) – which would affirm our right, as a Disabled woman, to live in freedom.
Senator Gillibrand, we urge you to imagine what it would mean to be dependent on Long Term Services and Supports for your freedom.
Imagine that the state or a managed care company has decided for you that they will cut the hours you can have to meet your needs or no longer pay for the services and supports you need to live at home and in the community. Imagine – because the government or a private company has made this decision – you will lose your home, your family, your worldly possessions, and everything you hold dear.
Imagine being forced into an institution where you share a room with a stranger, and strangers assist you with your most personal needs. You literally have no right to make decisions about your own body. They decide when they will assist you, what they will do, and even – something as basic as – if you will be given a shower.
Imagine that the facility can decide to take away your mobility – in our case, our wheelchairs and the assistance we need to get out of bed – so you are trapped in bed, or that it decides you cannot leave the facility. Think about how it would feel when they attach a monitor to you that sounds an alarm if you should try to go outside, essentially placing you on “house arrest”.
Imagine that when the managed care company or state decides to send you to a facility, that your risk of dying prematurely increases dramatically – a reality that existed long before COVID-19 – but was underscored by the thousands of institutional deaths during the deadly pandemic.
Imagine that this can happen to you at any time in your life and that you should expect to live out the rest of your days with others controlling every aspect of your existence.
Senator Gillibrand, we don’t need to imagine this. All three of us have been locked behind those walls and experienced the worst things you can imagine. This is what it means to be a woman in America who requires Long Term Services and Supports.
This is barbaric, inhumane, and truly unacceptable. We hope you understand that when states or managed care companies take away our freedom, we no longer have basic civil rights or civil liberties. Because this can happen to us at any time, we are not full citizens.
Thank you for your defense of our bodily autonomy as it relates to our reproductive rights, but our right to bodily autonomy shouldn’t be limited solely to that aspect of our lives. It is time for you to defend our right to full citizenship and freedom – as Disabled women – by cosponsoring the LaTonya Reeves Freedom Act and fighting for its passage.
Debra Bonomo, Chairperson of the Board
Roberta Wallach, Board Member and Prior Chairperson
Shelly Perrin, Prior Chairperson