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Our Right to Not Be Dead: Organ Transplants, Futile Care, and Assisted Suicide

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Introduction 

Health care is really important for people with disabilities. Without health care in the community, people with disabilities will live worse lives. 

Some kinds of health care are so important that they save lives. Some health care providers do not give people with disabilities health care that will save lives because we have disabilities. Sometimes this is because providers think that our lives are worth less than people without disabilities. Or, they think that our lives are worse. Sometimes it is because they can only give health care to a small number of people, and they think we will not get as healthy from their care as people without disabilities will. All of these ideas are wrong and ableist. All of these ideas kill people with disabilities.

  • Our lives have value because they are human lives. It does not matter if we need help or have a disability. Our life still has value.
  • Our lives are not worse than the lives of people without disabilities. Lots of different scientists tried to find out if people with disabilities said their lives were better, worse, or the same as the lives of people without disabilities. Almost all of the scientists found out that people with disabilities said their lives were about as happy – or about the same – as the lives of people without disabilities. This was still true even if the person with a disability needed a lot of help. 
  • For most kinds of lifesaving health care, people with disabilities do just as well as people without disabilities. For example, people with I/DD have just as good of results from almost all organ transplants as people without I/DD. 

In this section we will talk about different types of lifesaving health care. We will talk about how people with disabilities are sometimes discriminated against and not given lifesaving health care. We will also talk about how you can help fight against this form of discrimination. 

Organ Transplant Discrimination

The Problem 

An organ transplant is a kind of health care where surgeons replace someone’s broken organ with a new one. They get the new one from someone else who decided to donate theirs. For example, someone might get very sick and need a new kidney. They can get a new kidney from a donor. 

People need organ transplants when they will die without a new organ. It is not optional. The organ transplant can save their life. People with disabilities need organ transplants just as often as people without disabilities do. Sometimes, because we might get sick from our disability, we need them more often! But, doctors still sometimes refuse to give us organ transplants just because we have a disability. This is discrimination.

Discrimination usually happens when a group of doctors and surgeons who do organ transplants – called the organ transplant team – decide whether or not they want someone to be their patient. They might decide that they don’t want someone to be their patient because they have a disability. The organ transplant team might have decided they won’t transplant organs into patients with mental health disabilities. Or, they might say that we won’t be able to take care of ourselves after the transplant. Or, they might just think our lives are less worth saving. 

This kind of discrimination happens because there are very few rules that organ transplant teams have to follow. They have a lot of room to decide to treat or refuse whoever they want to. Organ transplant discrimination is wrong. 

How You Can Help 

  • Help advocate for an antidiscrimination law in your state. Advocates in many states have gotten laws passed that ban organ transplant discrimination. If your state does not have a law, you could help make one. ASAN has a toolkit about how to do this.
  • If you are discriminated against for an organ transplant, contact ASAN. We keep track of these cases and do what we can to help.
  • If you know about someone being discriminated against for an organ transplant, share information about the case! Many organ transplant discrimination cases go unheard because nobody knows about them. If you feel someone else has, ask the person if they would be okay with making their case public. If they are okay with it, share it online. 
  • Reach out to the Protection and Advocacy (P&A) system and the Department of Justice (DOJ). If you have been discriminated against when trying to get an organ transplant because of your disability, you could try to get the discrimination fixed. Contact your P&A first for more information on what you should do. You can find the Protection & Advocacy agency in your state here. 

You might also be able to contact the Department of Justice or file a report with them. They might agree to investigate, direct you to another organization, or even file a lawsuit. Here is a page where you can learn how to contact the Department of Justice. Keep in mind that filing a report means that you are starting a process that could lead to a lawsuit. If you just want more information, you can contact the Civil Rights Division instead by calling (202) 514-3847. 

Assisted Suicide 

The Problem 

Assisted suicide laws are laws that make it legal to help somebody kill themselves. They are usually supposed to be for people with an illness who will die soon. People with disabilities have mostly opposed assisted suicide laws since they were first made. There are a couple reasons why: 

  • Most assisted laws let people get help killing themselves just because they have a certain kind of disability. Most assisted suicide laws allow people who have been told by doctors they will die in six months to get help with killing themselves. All of these people have a disability. 
  • Doctors are often wrong about when people will die. Sometimes people who have been told they will die very soon go on to live for many more years. They can live good lives with a disability. 
  • Many people decide to kill themselves under these laws because of mistaken beliefs about disability, or because they aren’t getting the right services. Assisted suicide laws let these people kill themselves anyway, even if they would want to live if they had the services and supports they needed. 
  • When a state has an assisted suicide law, sometimes health insurance will cover your death but not your treatment. For example, several people who tried to get treatments covered under Oregon’s Medicaid program – a government health insurance program – found that it would cover assisted suicide pills but not treatments that would help them live longer lives!
  • Being able to get help killing yourself just because you have a disability means the government thinks trying to live isn’t worth it. It means that the government believes that living with a disability is worse than death. Disability rights organizations believe our lives are worth living

Assisted suicide laws discriminate against people with disabilities. We need laws that help us use our rights and live good lives in our communities, not laws that help us die.

How You Can Help 

  • Help advocate against making new assisted suicide laws. Assisted suicide laws pass because people think they are helping other people. Tell your state lawmakers why these laws will hurt us, not help us. 
  • Reach out to a group that works on assisted suicide, like Not Dead Yet. Not Dead Yet has been working on assisted suicide bills for a long time. You can talk to them about how you can help. Their website is: https://notdeadyet.org/about

Futile Care 

The Problem 

Sometimes doctors deny life saving health care when they think that their patient will die anyway. Some doctors deny life saving health care to people with disabilities when they think that a person will not have a good life after the treatment. When a doctor does this, they are denying treatment because they think it would be “futile,” or pointless. Sometimes this is called futile care or medical futility. 

Doctors sometimes decide health care is futile just because a patient will have a disability after they are treated. They think life is worse with a disability. For example, a woman who lost the use of her whole body was repeatedly told by doctors after her accident that she would be better off dead. They told her it would be easy and painless for her to die. They did not try very hard to save her life. The woman lived anyway. She got married, had a child, and had a good life. You can read about her story in a report by the National Council on Disability called “Medical Futility and Disability Bias.” 

Other times, the doctors decide too quickly that somebody is going to die and decide to stop giving them treatment. They might say that if someone is in a coma, they will never wake up. Or, they might say that the chances that someone will die are so high, it isn’t worth doing anything. The doctors can be wrong. Some people recover from injuries that make it really likely they will die. Doctors should give people the health care they need to stay alive while they wait to see if the person will recover. Doctors need to be very careful about deciding someone will not recover. Right now, doctors often are not careful enough. 

People have the right to get the health care they need to live. Stopping treatment for people with disabilities because of our disabilities is discrimination. 

How You Can Help 

  • If you are a person with a disability, share stories about your life. Many doctors stop treating people with disabilities because they think that having some disabilities is so bad that it would be better if the person was dead. That is not true. Share your story about what it is like to have a disability. 
  • Reach out to a group that works on futile care, like Not Dead Yet. Not Dead Yet has been working on futile care for a long time. You can talk to them about how you can help. Their website is: https://notdeadyet.org/about
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