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 EMAILwould 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
- 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:
- 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.
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:
- 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.
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:
- “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.”