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Fundamental Human Rights, Legal Rights, and Civil Rights for People with Brain Injuries; the Brain Injury Survivor Movement; Our Collective Identity and Common Purpose; the Human, Legal and Civil Rights Issues of People with Brain Injuries
"The most important thing to us is our human rights, not our role as patients or research subjects. We wish to be perceived as human beings with the same rights and desires to live safely, with the protection of law, and with the same respect and dignity that other people have."
-- Sue Hultberg (tbi survivor, 1985)
Fundamental Human, Legal and Civil Rights for People with Brain Injuries
We people with brain injuries are human beings. We have the same human rights and civil rights accorded by society to all other human beings.
Fundamental and inalienable human rights are the rights to which all human beings, by virtue of their being human, are entitled. They include the right to be treated with dignity and respect. They include the right to life, liberty and the pursuit of happiness. They include the right to self determination. These fundamental, inalienable and natural rights cannot be taken away by government or others.
Additionally, in many countries there are additional legislated rights which are called civil rights or legal rights. These include the rights to assemble and associate freely with others, the right to equality before the law, the right to freedom of speech, the right to practice the religion of one’s choice, the right to a fair trial and due process under the law, the right to freely move about, the right to petition, the right to freely exercise sexual orientation, and the right to vote. Further examples of civil rights and political rights include the freedom from unwarranted infringement by the government, the right to live without discrimination, and the right to live in safety.
Disability advocates have further promoted rights that revolve around ability and disability issues. These have translated into insights and legislation involving particular focus areas for people with disabilities such as accessibility and safety in transport, modifications in architectural and physical environment, equal opportunities in housing, and accommodations in employment and education. Disability advocates also have stressed self-determination in aspirations, goals, and lifestyle, and an emphasis on independent living for people with disabilities.
The Brain Injury Survivor Movement; Our Brain Injury Survivor Collective Identity and Common Purpose
Various disability (or ability) groups of people have carved out their own collective identity, for example, people with physical challenges, people with developmental disabilities, or people with hearing challenges, etc. These people have educated society and each other as to their issues and objectives.
We now have another group of people who have achieved a sense of collective identity and who have a common purpose, and that is people with acquired brain injuries. We people with brain injuries have come together into a kind of collective consciousness, because our issues are born out of a common experience. We all were born with one kind of brain and body, and that was changed by some acquired brain injury experience, such as a traumatic brain injury (tbi), stroke, brain illness or brain tumor.
Our sense as a community has grown by leaps and bounds in the last ten or 15 years (1995 to 2010). Some of us, for example, those affiliated with the Brain Injury Network, a brain injury survivor advocacy organization, have determined that what we have here is a brain injury survivor human and civil rights movement. One outgrowth of this movement has been a heightened awareness and resolve for us. In addition to being self advocates many of us have now chosen to be collective advocates, and we are working in concert regarding our human rights and other issues.
The Human, Civil, Legal and Disability Rights Issues of People with Brain Injuries
So, what are some of the human, civil, legal and disability or ability rights concerns of people with acquired brain injuries from stroke, trauma, tumor, illness, etc.?
The most important thing to us is our human rights, not our role as patients or research subjects. We wish to be perceived as human beings with the same rights and desires to live safely, with the protection of law, and with the same respect and dignity that other people have.
We, like all other human beings, wish to live freely and with dignity, and without disparagement or pity. We wish to be afforded the same natural inalienable rights that are accorded all other members of humanity. We object to being seen as objects of pity or derision or disrespect or condescension. It is most important to us that we not be used, as objects of pity, in order that others might profit from that. We object when we are showcased in an unflattering matter in order that others might profit.
We want our human and civil and legal rights protected, especially if and when we are unable to protect them ourselves. We want others who claim to be our advocates to intercede to protect our best interests. We also want others to understand that some of us are fully capable of speaking for ourselves and as a community, and when we choose to do so, these third parties need to acquiesce and not attempt to second guess us. There are times and there are human rights issues that we want to focus on, and no one else should think it is their place to challenge our rights to do so.
Freedom of expression is important to us, but we must never trample on the free speech rights of others to express themselves or to have their own opinions. We must take care to ascertain and verify the facts of any matter prior to making pronouncements about factual situations that bear upon us. Those of us who lead in our community must work in an atmosphere of fair play, honesty and respect in order that we properly serve our community.
We wish to be treated in all ways as human beings. We would like certain dehumanizing terms that are used sometimes to apply to some of us to be replaced. For example, the medical community uses a rather demeaning and callous term regarding some of us entitled Persistent Vegetative State. This term could easily be changed out to something less dehumanizing, for example, Persistent Non Aware State.
We also do not want to be referred to as being our medical condition. We are not stroke or brain tumor. So, please do not refer to us as being our medical condition. Refer to us as people with a medical condition.
It would also be exceeding helpful if all medical and other providers would use the same terminology and definitions regarding our medical conditions. We also wish to be believed when we report symptoms, so in that regard, the instigation of a Post Traumatic Brain Injury Syndrome for those of us who have sustained tbi would be very helpful to both the tbi brain injury patient community, and the family caregiver, service provider, medical and general communities as well.
Allow us, or when we are incapacitated, our representatives (for example, a trusted family member), to make informed choices regarding our medical care.
Regarding our “competency”, there are two sides to this and at first glance these statements might seem contradictory, but in fact both of these are necessary:
(1) Do not presume that we are legally or mentally incompetent, although some of us may be so, but do not think that we all are.
(2) Protect us all with appropriate laws and regulations from unscrupulous and devious practices that take advantage of us.
We would like to participate fully in society, or to the extent possible considering our injuries. But do not prevent us from doing so or, on the other hand, try to force us to do more than we can do. We each one of us have to go at our own pace and each one of us is on a different spot along the road.
We expect to have freedom of choice, for example, as to employment and living options, and to have the supports that will help us reach our goals. We want to have every opportunity to fully participate in all aspects of society, but many of us do need accommodations and supports to achieve and maintain community reintegration.
We would like laws, standards and procedures enacted or implemented that will protect our community members who are attending school or college from unsafe conditions. For example, we would like all colleges to have mandated reporter procedures regarding violations of the law against their students with brain injuries that occur relative to a college activity. We would like there to be national standards for college programs for people with brain injuries. We would like anyone suffering a concussion while playing sports in school to be seen by a doctor prior to going back to involvement in the sports activities of the school.
Additionally, when it comes to medical care, we would like all doctors to have adequate and up-to-date training in the assessment and evaluation of brain injury. We would like all brain injury rehabilitation programs to utilize a best practice model of care. We would like everyone with a brain injury to have access to good medical care for brain injury and also to have access to optimal brain injury rehabilitation.
We would rather people with brain injuries not be drugged and rendered unconscious and incompetent while they have to stay or live in a nursing home. We would rather that they have the opportunity for ongoing therapy and daily activity. We would rather they have the best quality of life available under the circumstances. And, we would like hospitals to offer some kind of community reintegrative care, especially (but not just) those that have these Centers of Excellence or Model Project ratings from the US government. We would like to see young people with brain injuries out of nursing homes and into more age appropriate assisted housing options.
And further:
Do not speak for us without asking our opinion.
Do not use us without our permission, for research studies, etc.
Protect our privacy and confidentiality when dealing with us.
Use already delineated human research guidelines when conducting research upon us.
Help us to mend and reintegrate into society.
Here are some other links on this web site that go into further detail regarding some of our human and civil rights issues:
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