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Hidden disability after brain injury. What does it really mean?

Is it different from other hidden illness or disability?

Is it the person, or the disability that is hidden?

I have learned more than I realised from my visit to a Stroke Support Group along with the thought- provoking comments received after writing the visit up in last weeks blog.

From all this new questions arose, in particular more about invisible disability, or hidden disability after brain injury.

I have been using the term hidden disability after brain injury for many, many years and this week I realised it has become a kind of automatic phrase  – till now anyway.

So today I am sharing my exploration of the term ‘hidden disability after brain injury.’ Your thoughts, comments and questions in the Comment section below or to my EMAIL would be wonderful

 

What is Hidden Disability After Brain Injury

I sought out our past training manuals to see the actual definition I had been using:

“Brain injury is often called a “hidden disability” because the person may have no physical effects but behave very differently.”

“Cognitive difficulties are often called the “hidden disability” because they may not be obvious but can have a significant impact on your behaviour and on daily life.”

For me it means those outcomes of brain injury that a person might not see, when they meet someone with brain injury. For example you usually see when a person’s leg or arm does not work, while you don’t see the cause of blurting; someone who is not able to monitor what they say – it is hidden.

 

Other Hidden Disabilities

I realised I have become more focussed on brain injury as THE hidden disability and conveniently forgotten the many others.  I found lists and lists of other ‘hidden disabilities’. The slide presentation at the end lists 111 hidden disabilities!

Looking for other sources I discovered work by the Centre on Disability Studies at the University of Hawai‘i on Hidden / Invisible Disabilities. As you can see in their list below Traumatic brain injury is listed, other forms of brain injury such as Stroke, Dementia, Parkinsons, are not.

• Psychiatric Disabilities—Examples include major depression, bipolar disorder, schizophrenia and anxiety disorders, post-traumatic stress disorder, etc.
• Traumatic Brain Injury
• Epilepsy
• HIV/AIDS
• Diabetes
• Chronic Fatigue Syndrome
• Cystic Fibrosis
• Attention Deficit-Disrorder or Attention-Deficit/Hyperactivity Disorder(ADD/ADHD)
• Learning Disabilities (LD)
• Medical conditions associated with hidden disabilities. Examples include short or long term, stable or progress, constant or unpredictable and fluctuating, controlled by medication and untreatable.

I would include all causes of brain injury including the early stages of dementia on such a list.

With many hidden disabilities and disorders, including Brain Injury – some people will also have physical outcomes, and other people will have none.

 

Why Talk About Hidden Disability and Brain Injury:

For supporters of people living with brain injury some responses include:

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• For people new to brain injury it can provide a good picture of what the outcome of cognitive difficulties can be
• It reminds you to be aware that difficulties can be more than physical. More than what you see.
• It hopefully creates a Pause, before speaking to stop youmaking statements that diminish the difficulties a person may be having. Comments like: “But you look so good” “I cannot see there is anything wrong”.
• It can help you to understand the impact of hidden disability for the person.

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People living with a hidden disability might say “Why bring attention to the issue if no one can see it?”

Fair enough, and it may help minimise stigma and judgement.

Here are some thoughts on why a person might be encouraged to talk about it:

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• Sometimes others may not realise a hidden disorder is the reason for the limitations a person is facing.

Becoming impatient because you are not able to concentrate, and remember lessons at school but the teacher does not realise so does not provide the structure needed.

• A person may choose to ignore their disability because it is not obvious.

Becoming increasingly forgetful and suspecting dementia, but telling no-one not even your family so the need for support is not recognised.

• When something is not obvious to others, the best way to respond might also not be obvious.

Becoming angry very suddenly for no apparent reason can push friends away. They don’t see why it is happening, and don’t know what they can do.

• There may be strategies, treatments, approaches available that are not being used because the difficulty is not recognised by you or others.

Not being able to hear well yet not getting tested and treated because no-one else knows.

• A person can start to feel invisible because they are not understood, or accepted as a whole person.

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The Challenges of Living with A Hidden Disability

The following quote echoes what I have heard experienced by many people after brain injury:

“… one of the major problems faced by people who have hidden disabilities is that often other people don’t see the disability and often don’t believe them. Frequently we are told that we don’t seem disabled. For many people they feel that the foremost discrimination anyone faces is to be disbelieved. Hidden disabilities can also cause difficulties because of the attitude of others due to fear or ignorance as people fear what they do not know or understand or what they can not see.  (Preliminary report Compiled by Stephen Brookes Rachel Broady and Lena Calvert (NUJ Equalities Officer) . National Union of Journalists, Disabled Members Council 2008 United Kingdom)

This quote and other interesting information on hidden disabilities can be found in “Hidden-disabilities” disabilities” a 2008 report prepared for the National Union of Journalists in the United Kingdom.

A number of challenges for the person who has a hidden disability are identified in Invisible/Hidden Disabilities prepared by the Centre on Disability Studies at the University of Hawai‘i:

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• “One is unable to “see” the disability.
• There are no “visible” supports to indicate a disability such as canes, wheelchairs, use or sign language used.
• It is a permanent disability that they cope with on a daily basis.
• The disability may be managed through medication or behavior such as in the case of diabetes, asthma, epilepsy or psychiatric disorders.
• It needs to be a documented disability in order to receive reasonable accommodations under the ADA.
• The person is in some kind of physical or emotional pain.”

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The Dilemma of Living with a Hidden Disability

The following provides some further thinking about the dilemma of living with a hidden disability:

1) To disclose or not; the advantage and disadvantage (though this may seem an odd way to look at it):

“It may be that the advantage of having a hidden disability is that one has at least a degree of choice in whether or not to disclose it to others and when to do so. The disadvantage being that when one does make that choice to disclose it the will tend to be more difficulty having that disability accepted as being “real”, because of the prevalence of what could be called “The doubting Thomas” syndrome applies here (If I can’t see it, it isn’t there or can’t exist at all.)”  (Preliminary report Compiled by Stephen Brookes Rachel Broady and Lena Calvert (NUJ Equalities Officer) . National Union of Journalists, Disabled Members Council 2008 United Kingdom)

2) To be recognised as having a disability or not

“People with hidden disabilities often do not feel like they belong within the Disability community because they are not considered to be “disabled enough” to fit into the group.  People with hidden disabilities are caught between not being fully accepted as people without disabilities and not being recognized as having “real” disabilities. Take a look around.  Is there someone in your personal life, in your class, on our campus that is just trying to fit in and wants to be accepted for who they are?  Do we treat that person with the dignity and respect that they deserve?  What can we do to make a difference in this person’s life? Imagine yourself in their shoes, how would you want to be treated?  (Preliminary report Compiled by Stephen Brookes Rachel Broady and Lena Calvert (NUJ Equalities Officer) . National Union of Journalists, Disabled Members Council 2008 United Kingdom)

3) The tendency to be judged because of how we look and not understood for the difficulties we might be living with

“Unfortunately, people often judge others by what they see and often conclude a person can or cannot do something by the way they look. This can be equally frustrating for those who may appear unable, but are perfectly capable, as well as those who appear able, but are not.” (Invisible Disability Association)

 

As Supporter What Can You Do

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• Take great care not to judge. Remember that saying “Don’t judge a book by it’s cover” – never more true than here.
• Don’t be surprised by what you see. Expect the unexpected.
• Think before you speak. Take care not to say things that may be hurtful or unhelpful like – “You seem fine to me.”   Revisit 9 Things Brain Injury Supporters Should Not Say to a Person with Brain Injury
• Listen to what the person is telling you about their strengths and difficulties and respond accordingly. Just because you cannot see it does not mean it does not exist.
• Understand the potential outcomes of brain injury xxx and link that knowledge with what you observe.  A good strategy to minimise being judgemental or making assumptions.
• Consider all sides of the dilemma that can occur. Work out ways you might best you resolve or minimise these. You might want to revisit how to approach ethical dilemma
• Support others in the community to understand what a hidden disability means along with  a better understanding of what brain injury means

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More Interesting Reading about Invisible / Hidden Disability

The Invisible Disability Association  has publications, videos and further information on invisible / hidden disabilities.
Invisible/Hidden Disabilities presented by the University of Hawai’i  online professional development training has further information as part of their “Teaching All Students Reaching All Learners” project.
“What’s Wrong with You” provides more information on hidden disability including an extensive list of the types of illness and disability that are “hidden” (111 of them)and a long list of well-known people who lived with a disability.

Whats Wrong with You? Hidden Disabilities and Diversity in the Library Workplace National Diversity in Libraries Conference: From Groundwork to Action.

 

And Finally

You know those times you think “Just one more and I will finish.” I did that when researching ‘hidden disability and brain injury’.
My final “just one” truly was the very last, and took me back to the beginning for a rethink of terminology. DiversityInc.com. This quote set me thinking all over again:

[quote]Never say “hidden” disabilities. Say “non-visible” or “non-apparent.”Many disabilities are not apparent, such as serious illnesses or chronic health conditions, sensory limitations, or mental-health and learning disabilities. When referring to these disabilities, avoid using hidden, as it has negative connotations, implying purposeful concealment or shame.[/quote]

What are your thoughts?