The Breakthrough

What is the “chilling effect?” A Plain Language blog for all advocates

Written by DNWML Community Engagement Coordinator, Eliot Carter

This blog will be different from my past blog posts. Usually, I look at a policy or court case and try to answer the questions of what, who, why, and how. Instead, I will focus on a term that I hear a lot in the media. It feels so familiar now – Congress will pass a law or the President will sign an Executive Order, and reporters will talk about how the new policy has created a “chilling effect.” What does this actually mean, and how does it relate to people with disabilities and advocacy?

When most people say “chilling” to their friends, they usually mean feeling calm, mellow, or having nothing to do. “Chilling” is an odd word because it can also refer to a totally different emotion – being scared. Maybe you remember books called Michigan Chillers, which were fictional stories about monsters from different Michigan locations, like Sinister Spiders of Saginaw! Anyway, I used to think a “chilling effect” meant something was so scary that it gives you the shivers. It turns out, this is a term that means something more specific, and it has been used by lawyers and advocates for decades. When a policy or event has a “chilling effect,” that means that people are less likely to exercise their rights because of it, even if the policy doesn’t affect those rights directly.

Let’s break this down further: the United States has a Bill of Rights, which is a list of things the government cannot stop you from doing. Some of the most famous rights are from the First Amendment: freedom of speech, freedom of religion, freedom of the press, and freedom of assembly. There are limits to some of these freedoms, especially if someone intends to hurt or restrict the rights of others. For example, the government can’t punish you for saying what you want, but they can punish you for yelling “fire” in a crowded building when there is no fire, because you will end up making people panic and people may get hurt.

People with developmental disabilities also have their own Bill of Rights. Though it’s usually just called the DD Act, the full title of the legislation is the Developmental Disabilities Assistance and Bill of Rights Act of 2000. It talks about the type of assistance and services that people with developmental disabilities should get. It says that people with developmental disabilities have the right to services that maximize their potential and don’t restrict their civil liberties. Civil liberties include voting, advocating, and all of the things mentioned in the original Bill of Rights and the Amendments that came after. This is just one example of many laws and court decisions that have given or proved that all Americans have legal rights.

A recent example of the chilling effect was in spring of this year, when Dr. Jay Bhattacharya said the National Institutes of Health (NIH) plans to create an “autism registry” using data from the federal government and private medical records. This means that the government would match data that they have through Medicaid, Social Security, and other programs to people’s records from doctors’ visits, and even data from wearable technology like Smart Watches. After that, some people who suspected they had autism and their caregivers said they no longer wanted to get an autism evaluation. They still had the right to get an autism evaluation, but they were afraid of what might happen to their personal information if they did. Later, Dr. Bhattacharya took back what he said about using private medical records, but some folks still don’t trust that their medical records are safe. That is what the chilling effect is about – a lack of trust that the government will protect their rights. (Click here to read the Autistic Self Advocacy Network’s Plain Language statement about this)

Another example is the reaction to the Executive Order called “Ending Crime and Disorder on America’s Streets.” This order got a lot of attention from the way it says unhoused people should be treated. It says President Trump and the departments he oversees will not give money to programs like Housing First, which helps people get into homes so that they can have a stable place to live before they start other programs like mental healthcare or job training. Instead, they will give money to programs that can put homeless people into centers where they are not allowed to leave when they want to.

But this Executive Order doesn’t just talk about unhoused people. Section 2 says that the Attorney General of the United States (currently Pam Bondi) should “seek, in appropriate cases, the reversal of Federal or State judicial precedents and the termination of consent decrees that impede the United States’ policy of encouraging civil commitment of individuals with mental illness who pose risks to themselves or the public or are living on the streets and cannot care for themselves in appropriate facilities for appropriate periods of time.”

Let’s break this down: judicial precedents and consent decrees are the results of court cases. To reverse these would require legal action where both sides argue about why they think their position is right. It is also important to note that the order says this applies to cases about people with mental illness. That includes those of us without homes, but also people with mental illness that someone decides are dangerous or unable to take care of ourselves. This has made many disability advocates worried, since many victories for the independent living movement came through winning court cases, like the Olmstead Decision of 1999 (to learn more about this case, click here). This order says that the Attorney General could try to overturn these cases. But these court decisions and the laws that resulted from them, like the Developmental Disabilities Assistance and Bill of Rights Act, are still in effect.

The idea of these rules getting overturned is frightening to many people who know the history of institutionalization. In July, we hosted a screening of a documentary about Willowbrook State School, an institution that kept children and adults with disabilities locked away without proper care, clothing, or space to learn and play (if you missed this event, you can watch the documentary for free on YouTube by clicking here). The buildings were dirty and smelly, and people got sick all of the time. This was just one institution of hundreds in America that had similar problems. Centers for Independent Living, like Disability Networks, were created to help people with disabilities live in a way that allowed them to get the care they needed while still allowing them to go to school, work a job, have hobbies, and go to places in their community when they wanted to. Overturning court cases like Olmstead could make it easier for the government and healthcare providers to put people with disabilities in institutions again. At the same time, if Medicaid funding is cut and there is less money to pay healthcare workers, we would be in very real danger of returning to a time when people are put in unsafe, unclean, and dangerous places like Willowbrook again.

However, we have not returned to that time yet. But there is a chilling effect happening. Some people with developmental disabilities stayed home from an advocacy event in Lansing and said that the reason why was that they were scared of the new executive order. I don’t think these people were wrong for being scared – in fact, it shows that they are keeping up with the news, and being informed is a good thing. Also, other policies like increased ICE presence and the threat of being detained and deported can contribute to someone’s fear – this is not a chilling effect, because their rights and safety are actively being harmed by existing policies. Everyone’s level of personal safety is different and can change from day to day.

If you are going to exercise your Freedom of Assembly (that is, your right to gather with people for a rally or demonstration), it is important to think about the risks involved. This could be making sure you have food, water, and other medicine you might need in an emergency. These also include legal risks. But there are also risks that come from not acting. The public will not know about how people with disabilities’ rights are threatened unless we talk about it. Sometimes people will not listen to us until we show up where they can see us. That is how the independent living movement started – showing up on the streets, in schools, and in government buildings where we couldn’t be thrown away and ignored. Now, we have lots of ways for people to see us and hear our stories. You may choose to stay home from rallies but contact your legislators about your concerns. You can also use traditional media or social media to get your message out. If you want to talk about your options, contact me to speak to a member of our advocacy team at eliot@dnwml.org.

Whatever you do in these times, continue to hold onto that sense of Disability Pride that we celebrated in July. Our lives are worth living and what benefits people with disabilities benefits all people. We don’t need to prove that we can be productive members of society, we already are society.