Privacy after brain injury. Messy. Complex. Important.
Do you think it is different to privacy for any citizen? I say Yes … sometimes.
People can usually choose what remains private. A person with brain injury, or a person with a disability may find this choice – of what is private and what is not – decided for them, not considered, or disregarded.
There are times when it is even more messy, more complex, and more important. That is what this article is about – what makes privacy after brain injury messy and what you can do about it.
Privacy After Brain Injury
This whole privacy thinking was brought to mind through an article sent to me by FFB (Friend and Fellow Blogger ) ExcusesVsLife. The article was this one about Michael Schumacher and the lack of information made public about his brain injury.
An added note – it is reported Michael (pre-accident) was a person who carefully guarded his off track life, his family and personal privacy. I am guessing his family are now his guardian / advocate / next of kin, and therefore legitimately speak on his behalf.
Even if someone publicly shares ALL their life details (and we can all probably think of a celebrity or two who over-share). The person has a right to change at any time. A person still has the right to decide to keep private what, and when they wish.
Just as I was contemplating all this. More thinking came along.
Not long after my reading the article, the news was filled with the death of David Bowie. During this time I heard a radio interview where a person described the ‘secrecy’ of information of David Bowie’s last 18 months of life (I would substitute privacy for secrecy here). “Why should he keep this from us?” ‘Us’ being the public.
In the reported experience of these men I realised there was a familiar thread for people living with brain injury and their families. No – not the screaming around a race-track in a very fast car. No – not performing in front of thousands of people. I mean the complexities of privacy, the forms it can take and what information needs to be shared – and with whom.
For Michael S. and David B the reasoning used for sharing info was fame and a kind of obligation to the adoring public. ‘We have a right to know’.
For people with brain injury the privacy issues are often around treatment and support. “We need to know so we can provide the best support”. “I can’t help you if you don’t tell me everything.”
This gets even more messy and complex if a person is not able to make decisions themselves – other’s might decide more, rather than less information needs to be shared.
Formal Stuff about Privacy
At the end of this article I have included a formal definition of privacy and links to a range of privacy legislations around the world. It was right here, but I am not one to wade through a lot of detail, so I figured others might think like this too. Rather than grandly delete it I moved it to the end of the article – so those who like definitions and legal stuff can still review it.
What Might Be Different About Privacy After Brain Injury?
In researching this article I learned about privacy in ways I, (and maybe you), had not thought about. Commonly we think about health information, about privacy of our data. About privacy policies scattered all over the place. I discovered there are other potential ways privacy can be intruded upon.
If you have other examples please share them in the Comments below.
1. The outcomes of brain injury itself
That sounds odd I know. That cliche “I am my own worst enemy” can be an outcome of privacy after brain injury. Take impulsivity and disinhibition as examples. If, as a result of damage to the brain, you are more impulsive, or find yourself unable to stop doing and saying things, you might share private and personal information about yourself, or others without being aware of it.
Short term memory loss may mean you need to give others data normally kept private – many is the time I have heard of support workers being given PIN numbers to assist people with banking.
2. Personal Spaces
Curtains for screening around a bed are not soundproof! Sharing a room in hospital, rehabilitation service or even longer term accommodation – conversations and activities may be overheard by room-mates and strangers.
Sharing room/accommodation with strangers not of one’s choosing. Sharing strangers may become privy to private information normally kept to one’s self.
People entering your space at times not planned with you. This might be home, hospital, accommodation – people coming into your space, maybe they even knock and wait – but the ‘when’ has not been negotiated with you.
People entering your space without waiting for permission. With, or without knocking. Regardless of your convenience.
Support staff at home, or in shared accommodation, can become overly familiar and reduce privacy standards as familiarity increases. A kind of “ownership” over a person’s life.
3. Getting Around
Transport surprisingly can raise issues of privacy. If a person is not able to travel independently a third party – the driver (stranger or family) – may be privy to things a person would rather keep private – places visited, people met etc. No privacy on a date for instance.
Some transport may be signed such as a facilitiy logo, “disabled” markers.
(The above uses information from Neuropsychosocial Intervention: The Practical Treatment of Severe Behavioral Dyscontrol After Acquired Brain Injury. By Robert L. Karol CRC Press, 26Jun.,2003 pages 78 to 81).
4. Sharing Information
Having to share private information multiple times as supporters and professionals come and go.
Having no control over whether or not information is shared with a person engaged as a supporter.
Giving information online without careful thought to who has access or readership.
Sharing your information multiple times as you seek treatment and support.
5. Privacy of our brain, mind and function.
This was new thinking to me. And thought-provoking. Can the use of brain imaging impinge on a person’s privacy?
Brain scans, images and testing can be used in many ways including – diagnostically; to prove brain injury; to help determine competence; to further the knowledge of the brain and brain injury.
Even pictures are information, they contain data about us.
As brain imaging progresses – are there potential privacy issues to think about? Note that many countries have laws which cover health information and may limit these issues occuring.
How might brain imaging be used in a way that privacy needs to be considered:
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- if it is to limit a persons freedom – criminal proceedings, legal arguments.
- if it means not having a say in whether or not images are taken of your brain – e.g. if you are unconscious or under anaesthetic.
- possibly having no control over who views your brain images.
- brain images presented without your permission. Hospitals for teaching purposes, legal and criminal cases.
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This work is early stages but if you are interested in more. Information was drawn from I Know What You’re Thinking: Brain imaging and mental privacy Sarah Richmond, Geraint Rees, Sarah J. L. Edwards, OUP Oxford, 2Aug.,2012. Pg 139
6. Personal Care
Needing assistance with aspects of personal care
Having supporters (strangers) in your bathroom
Being unable to carry out body functions such as going to the toilet, without assistance.
7. Media Representation
Facebook, Twitter and other social media outlets enable any person to present pictures of people without their consent. Photos and articles of people with disabilities pop up showing them being “helped” or being “inspirational” – often without there knowledge and permission. A recent photograph posted by an observers of a supermarket employee assisting a person who was blind went ‘viral’. Did the man being assisted know of the photo sharing?
The above ways are beginning thoughts about privacy after brain injury. What other aspects of privacy have you been made aware of?
https://pixabay.com/en/fingerprint-security-privacy-policy-979598/
What Can You Do To Ensure Privacy After Brain Injury
Make privacy and confidentiality meaningful –
Make them more than just a couple of words on a sheet of principles.
Accept the messy complex nature of privacy and seek to understand it
Obtain knowledge of local, state and national requirements of privacy.
Understand what ‘rights’ and ‘responsibilities’ really means for you and for other people.
Be mindful of privacy and confidentiality before sharing ANY information:
Think carefully before sharing information with, or about, another person –
As a person with brain injuries think before sharing. What do you want to share and with whom. If you are unsure – find out what your rights are or enlist someone to help you.
As a supporter DO NOT talk to others about individuals you are supporting unless you have permission. And Yes this means your nearest, and dearest, confidante and debriefer.
Respect the way each person wishes to share, or to keep private: their lives, personal information, health records, personal space and care.
Think about where you are before you start sharing information – mobile phones now enable contact anywhere and everywhere. Conversations are overheard – think about chats you might have overheard on a bus or train! Talking to others in public spaces can also be overheard: coffee shops, public transport.
Consider reasons for breaching privacy
Check your reason for seeking out information – is it to benefit the person or are you just being curious. Will your knowing assist the person directly?
There is an argument that information about Michael Schumacher should be shared publicly to further understanding and educate the public about brain injury. For Michael and for anyone living with brain injury is this not a personal choice. It is surely not up to outsiders to decide how and why information will be shared.
Don’t assume a person with a brain injury is not able to make decisions about their privacy and sharing information. If in doubt there is a legal process to be undertaken if decision-making is to be done by another person.
The right information and/or support in the right way can help. If the only language I speak is DuckQuack then I might seem to have ‘diminished capacity’ to understand and make informed decisions if the information is in English.
Sometimes a person might refuse to share information that appears detrimental to their welfare. This is still that person’s right and not ours to decide for them.
Take great care sharing information online
Think very carefully (and sceptically) about sharing personal stuff on online – places such as social media sites and chat groups. If you care about how your information might be used – find out the rules before sharing.
Remember it is difficult to keep information 100% private on the internet as many politicians and actors have found to their detriment.
For more information, tips, and strategies see these articles from the Brain Injury Network ‘Protect Your Privacy Guard Your Confidential Information On-Line!’ and ‘Online Brain Injury Community’
And Finally
Researching and writing this has created new thinking for me about the intricacies of privacy. I had not thought about brain scanning. I had not thought about transport. This article is not all there is. it is an ‘I hope to get you thinking about privacy’ writing.
Please share your thoughts, resources and insights in the Comments below.
As I said at the beginning. Here is a bit of more detailed information about privacy if you are keen to look at the formal stuff:
What Is ‘Privacy’?
First – a quick look at what “privacy” is. I know we all know. Just a little professional reminder from Wikipedia:
“Privacy is the ability of an individual or group to seclude themselves, or information about themselves, and thereby express themselves selectively. The boundaries and content of what is considered private differ among cultures and individuals, but share common themes. When something is private to a person, it usually means that something is inherently special or sensitive to them. The domain of privacy partially overlaps security (confidentiality), which can include the concepts of appropriate use, as well as protection of information. Privacy may also take the form of bodily integrity.”
Privacy Legislation Around the World
It is a fundamental human right enshrined in many documents around the world. If you need concrete evidence of the importance with which we hold privacy –
The Universal Declaration of Human Rights
Proclaimed back in 1948 after consultation between many countries
Article 12.
No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation. Everyone has the right to the protection of the law against such interference or attacks.
European Convention on Human Rights
Article 8 – Right to respect for private and family life
1. Everyone has the right to respect for his private and family life, his home and his correspondence.
2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.
Privacy acts have been drawn up in some state and national governments. In 1988 the Australian government ratified the Privacy Act. This included a section on health and medical privacy
On a more local level – many organisations including health and rehabilitation have a privacy policy and guides to protecting the privacy of individuals. This article from NSW about people with disabiities and decision-making
Such an important topic and one that really needs to be put into mainstream media.
One thing that I would like to say is that the loss of privacy is often immediate and extreme in the initial period after severe injury. It’s important that people understand that they have a right to ‘reclaim their privacy’ as they become more independent.
For example if you used to need a family member to help you/do your banking but now you don’t, it is your right to change your bank details so your family no longer have access or knowledge.
Likewise if you lost privacy in other areas, is is your right to now say ‘No, that is not appropriate anymore. This is how I want X done from now on’.
I’ve had future employees come to interviews who try to tell me personal details of their previous employer. That’s a red flag not to employ that person. Unless that employer gave me that information in a reference, it is not appropriate for anyone else to share it.
Be it a drawer you no longer want employees to open or your bank details kept private, or even who has your phone number – what you want kept private is your choice.