To Say or Not To Say – After Brain Injury Part 1

To Say or Not to Say Brain Injury. Photo of 3 Buddha statues one each with hand over mouth, ears, eyes

Recently I have received several letters from people living with brain injury wanting to know how to handle people who say hurtful things, or who say things that are supposed to be motivating but are instead are a reminder of loss. “If you put your mind to it you can do anything”.

Timely, when this week when I came across an article entitled “9 things not to say to a wheelchair user” it reminded me of other articles I have read about what to say, and what not to say when a person has a brain injury.  We all know words can build us up, or break us down, and most often the speaker does not mean them to be harmful.

So today as a reminder to all of us.  Articles that give clues on what not to say when a person has a brain injury or other life changes. Next week in Part 2 some suggestions on what you might say.


‘NOT To Say’ When a Person Has A Brain Injury

Nine Things Never to Say to a Wheelchair User

Firstly – the article mentioned above. Well-meaning but often unhelpful things people can say when you use a wheelchair such as ““Well done for getting out and about”


Nine Things Brain Injury Supporters Should Not Say to a person with brain injury

And here are 9 things people should not say to a person with brain injury including statements like ““You did it yesterday why can’t you do it today, you are just not trying.”


Access to the World: Talk About, Think About and Act Upon ‘This Stuff’

A confronting reminder of what ‘ableism’ can mean and the subtle forms it can take from Radical Accessible Mapping Project. Examples such as  “being talked about as though i don’t exist while i’m sitting right there”


I Am Not Your Inspiration

Then there is the whole wide area of ‘inspiration porn’ a term attributed to the late Stella Young. Statements, videos, posters with sayings like “The only disability in life is a bad attitude.”

And you should not miss Stella Young describing inspiration porn in her own inimitable way:

The next article “To Say or Not To Say – After Brain Injury Part 2” will look at how communication might be more helpful, an strengths based.

What experiences have you had around what is said that is not helpful?

5 Responses to To Say or Not To Say – After Brain Injury Part 1

  1. Matthew Gale July 21, 2016 at 5:53 pm #

    Hi Melanie,
    I think the funny one I have is about absent mindfulness or forgetfulness when well meaning members of the family over 60 . Say ” Don’t worry that happens to me all the time”.
    All a while they forget you’re 47 years young but like the black box {brain of the car) in todays cars. If you dropped it, damaging the circuitry and reinstalled it . They couldn’t possibly expect the car would be as reliable as the day you bought it.
    Like Stella said “no amount of positive thinking is going to make a Access Ramp appear at wheel chairs users home”.
    I have learned to accept it and try and learn the new rules with the assistance of my AHA Support Team.

    Thanks to you for the wisdom for those of us who are endeavouring to know the new self.

    • Melanie Atkins July 23, 2016 at 10:09 am #

      These examples just keep coming. I guess we just gotta keep educating everyone about the affects of brain injury – seen and unseen! Thank you for your beautiful comment Matthew. Regards Melanie

  2. Melanie Atkins July 23, 2016 at 10:07 am #

    BrainFan- Wow. I was expecting that perhaps some of the comments might be understandably naive, but these are VERY bad. Sorry for the lengthy response, but one of these hit a raw nerve with me as well:

    “What happened to you then?”

    I actually don’t mind the question, because I understand that an invisible disability is poorly understood and I (used to) welcome an opportunity to explain why I’m where I am today: not working.

    The problem is that the innocent question takes a turn to abusive interrogation. As the writer says:

    “what you’re actually asking me to do is explain and justify my disability.”

    Yup. These people seem to believe that it’s their place to actually REFUTE my disability. The fact that my brain injury has spared me the loss of my intelligence is not seen as something to be thankful for; it’s something to use as a weapon with which to attack me. The line of inquisition comes with the implication that my “friend” would certainly rise above my condition and continue working. In fact, my questioners always add that they experience the same deficits that I do. It isn’t a matter of brain injury; it’s aging. As one friend put it: “Mac, these just sound like excuses.”

    • Melanie Atkins July 23, 2016 at 10:12 am #

      Thank you to BrainFan for this comment – yet another vivid example of how we can be well-meaning but not understanding. Brain injury is real whether we can see it or not. Thanks again Melanie


  1. To Say or Not To Say - What to Say After Brain Injury - Part 2 - Changed Lives New Journeys - August 3, 2016

    […] previous article “To Say or Not To Say – After Brain Injury Part 1” looked at what people say that sometimes can be hurtful, unhelpful and at times damaging albeit with […]