I don’t like trending buzzwords much as they always leave a sour taste in my mouth where it feels like people are just being quick to jump on the latest bandwagon. That’s why I’ve been reluctant to bring up the subject of how much of the modern world is still behaving as an ableist society…. that is until now. Yes I’ve spoken before in Living with invisible disability, brain injury about how having an invisible disability can mean both able bodied and disabled people can misjudge you, but the other day I witnessed something that proved to me how far some people still have to come in their understanding of those for are not like them.
Trigger warning: This level of ignorance I’m about to describe is likely to upset some.
I’m very active on Twitter and often tweet about brain injury and many other forms of chronic illness (if you don’t already you can follow me via @michelle_munt.) The other day I retweeted an announcement of the company that a guest blog for that the latest blog post by another of their guest bloggers was now available to read. The blogger, Lauren has a spinal injury and so we blog about different things but as CFG Law is a law firm for personal injury they are keen to highlight how the disabled community can cope with their injuries. The tweet said: “Laurens latest blog with @CfgLaw is now available and Laurens experience of care at home… #sci #careathome #cfglaw”.
Laurens spinal injury came from being hit by a van 11 years ago as she crossed the road at the wrong time. She was distracted and unfortunately stepped out and the driver couldn’t stop in time. The accident left her completely paralysed, but since 2016 she has set up and runs the charity Road Safety Talks Charity to raise awareness and better educate others. I haven’t had the opportunity to meet Lauren myself, but she sounds pretty awesome to me! I can’t begin to imagine the amount of work it takes to set up a charity. She also is a motivational speaker, so I take my hat off to her.
One particular response to this made me see the ableist society at its worst.
Now the tweet has been taken down so I can’t quote it, but one lady put “Rest in peace whether he recovered or not.” WTF? I did ask her what she meant by “rest in peace”, pointing out that Lauren is a female blogger, ie alive and SHE has a brain which she is putting to good use, but I never got a response.
Clearly this person didn’t read the article so didn’t understand Laurens situation, and this person isn’t one of my followers so I don’t know what her situation is either. But what shocked me about this was that she seemed to be implying that Lauren might as well be dead because of her disability. I had understood that some people may well think like this, particularly if they haven’t ever met someone who is doing so well in life despite their disability, but I never thought anyone would dare share this ignorant view so publicly. I mean it’s Twitter! Hello, now we all know how stupid you are!
This got me thinking about examples of ableism I’ve experienced that I might have overlooked.
Again on Twitter (sorry Twitter I mostly have a very positive experience of you and find the community very supportive so I don’t mean to make you look bad) a “well meaning” health coach responded to a tweet about my brain fog. I did mention I have a brain injury (because I do mention it constantly) but she still told me that if I changed my diet and lifestyle I could solve my problems, including brain fog. Symptoms like this, she told me, are just a reflection of the imbalance that I had created within my body.
Now don’t get me wrong, I do realise a healthy diet and active lifestyle can help, I’ve even advocated for this myself. But I have a brain injury, I have to fight against the imbalance in me every day! The structure of my brain is difference and so are the chemicals in it. This also gave me hypothyroidism and so my hormone levels are not where they need to be. But there isn’t a formula which I can follow everyday to correct these issues. Everyday is different, some days I’m doing well, and others I’m not. Living with a brain injury isn’t as simple as doing exercise and eating the right foods to remove symptoms such as brain fog.
As I didn’t have the energy for an argument, and because I knew she meant it in the nicest possible way, I just let it go. But actually I was hurt at the suggestion that my symptoms were my fault. You could say that as I was “complaining” about my brain fog she was trying to offer a solution, but as a fellow coach and blogger I don’t accept this. I’m a blogger who uses her experiences to offer a voice for other brain injury survivors and raise awareness, I’m not actually asking for a solution. Of course I am grateful of any new information others can offer, but simply blaming me for my struggles is not helpful. What’s more, it’s not even like we discussed my lifestyle for her to be able to identify what I might be doing wrong, it was just “obvious” to her that I MUST be doing it wrong to be experiencing these symptoms.
And then there was the guy who said “what, so people actually read your blog about brain injury?”
Ugh, honestly it was only because this guys behaviour made me think that he might either been damaged or was on the autistic spectrum that I didn’t roll my eyes at him. Yes, people read it. Just because you’re not interested, assume it’s boring, has no value or whatever, doesn’t mean that’s how the whole world feels. The idea that writing about how my life has changed due to my brain injury must have struck him as self centred. Why would anyone want to hear me droning on about it? The funniest part about this conversation was I’d hired him to clean my drive at the time. Yep, his idea of building rapport with his clients was to belittle them! You won’t be surprised when I tell you I never hired him again.
I’m sorry to say that there are people out there whose ideas of the world are very much stuck in the ableist society. Do I lose sleep over it? No. There will always be things that as individuals we can do better and ways in which we can expand our understanding of others. Just like I’m sure I understand very little about the tribes who live in the Amazon and are untouched by the modern world, there will always be some people who don’t understand the disabled community. I do believe that overall things are improving and we have to accept it’s a work in progress…. for now.
Other articles you may like:
- Terms that might accidently offend those with a brain injury
- Guest post: Hope Clark on “My new normal” following her brain injury.
- Brain injury survivor explains why your career isn’t your self-worth.
- Listen to what your body needs after a brain injury
- Do I tick the disabled box or not? Brain injury is more complicated than that.
- Wego award win: Plan to promote progress for brain injury survivors
14 replies on “Living with a brain injury in an ableist society”
Excellent Michelle, you are very clear in getting your message across, I don’t think people have any idea, we who are disabled, brain injured or live with chronic illness, are just as valuable as any other human beings, we are not defined by this, in fact despite this we get on and inspire others and give hope. Another great perspective Michelle
Thanks Jo, I appreciate your opinion. Do hope that we can help people understand one another better. Even if people don’t understand it costs nothing to be kind.
Your post is simply another of your informative, encouraging, being a good example of a TBi-recoverer/survivor… plenty of hand claps, kudos, “likes”, a gold medal, an appreciation certificate, and prayers of encouragement for you to know what you do positively impacts folks. Keep the focus and the heart, Michelle. Go…
Thanks so much Chuck, your enthusiasm makes me smile 😊
Sorry Michelle, I’ve learned not to share a lot with people. They don’t always understand. Only when it becomes an issue do I mention I suffered a brain injury. I jut went home recently, people think I’m a miracle to be doing as well as I am. I tell them I have good and bad days, but the bad are becoming less. Keep your head up hon! WE GET IT & APPRECIATE YOU!
Thanks so much Sandra! And I’m pleased to hear that the bad days are becoming less for you, that’s great news!
Being disabled/partially or totally is an ugly place to live in society, of that there is no dought. Yet peoples ignorance is also a disability they just don’t realise it. I also find it annoying when people say ( you poor dear you’ve had a stroke, I can imagine how you feel ) really ? But to become bitter and twisted about it is just as foolish, these words are usually said in sympathy after all. Cognitive damage is silent and unseen so we need to be patient and try to educate the ignorant not punish them. It is what it is
so be happy and try not to judge too harshly.
That’s a very balanced, mature response which I think we all should aim for. Thanks for being a great example of how we all, both disabled and abled should hope to be.
Thank you for writing such interesting articles.
Being something of veteran of living with the aftermath of a brain injury that was acquired some fifty years ago I find them to be particularly useful.
The greatest difficulty that I have encountered is ot with the actual, physical, injury. ( In my case, the injury to the brain was to both sides of the organ along with a degree of torsion ) Most of my problems arose from the medical treatment that I received AFTER the first year or so after the incident. The best example of this mistreatment is that I was first prescribed Phenobarbital after undergoing two operations to lift the embedded skullbones from my brain. The phenobarbital was soon given along with phenytoin-which was supplemented with carbamezapine. The phenobarbitone was replaced with primidone at about this time as well. My condition worsened considerably so much so that I ended up being precribed anti-psychotics in addition to the anti-epileptic medication to ” control ” my condtion.
My main problem is, and always, as I mentioned previously, the attitude of other people. Medicos’ , I can just about cope with seeing that they seem to be hidebound through the training that the recieve. The attitude of an alarming minority of ordinary people is what really disturbs me. These people in particular always seem to assume that any behaviour that deviates from their percieved view of what passes for ” normal ” is a sure sign of some form of mental illness which, it seems, needs a physical intervention by them. I have been beaten up on a few occasions.
Maxwell I think it’s awful that anyone thinks violence is the answer to anything. I’m sorry that you have been assaulted. I do hope that over the last 50 years you have seen progression in people’s understanding, but we still have a long way to go.
All of thiat which I described occurred about fortyfive years ago-things have improved since then.
However, here in the U.K., things have improved ever-so-slightly. There is still the popular notion that pesons who ” have fits ” become unconcious, bite and swallow their tongues and shake and quiver.
And there are people like me, who just go into a dream-like state, smelling smells that aren’t there and sweating like a marathon runner.
Any other behaviour is just ” attention-seeking “.
There is also a peculiar perception that is prevalent especially amongst some people who think that, because they know someone who is an epileptic, that they know what to do should the situation arise.
Of course, when you throw the little spanner in the shape of a brain-injury into the mix, things get really interesting. I could ” Bore-for-Britain ” on that topic -let’s just say that life is interesting…especially if I am in a mischevious mood.
The thing that really interests me concerns is the efficacy of the anti-convulsant medication that I was forced to take. All three had a warning that they ( individually ) were capable of causing the taker to harbour suicidal thoughts. ( or as the blurb goes, ” potentiate suicidal ideation ” ) Then there was also the trifling effect of each of the seperate medications REDUCING the effectiveness of the other two.
I thank you once more for having the patiece to read this.
It’s a good point that how to help one person during a fit isn’t necessarily going to be the solution for the next. But I wouldn’t want people to be put off from trying to help, as I think already people stand back and don’t intervene too much. I remember as a child falling of my bike as I rode home from school and as I didn’t have a helmet I cut my head. I saw a car pull over ahead of me and I thought they were coming to check on me. But no, they were just running an errand and went on their way. I remember being surprised that no one cared about the child lying but the side of the road with the bleeding head. I was only about 6 or 7.
I had a friend in the past who was adamant that balanced holistic nutrition was going to heal her husband along with positive thinking and prayers. He had suffered a stroke with partial paralysis. They had always believed in living a healthy lifestyle. After a lot of hard work, prayers, positive thinking, and time, she realized that his brain injuries and paralysis were permanent. The next thing I knew, she had left her loving, faithful husband who had helped her raise her 2 children from a previous bad marriage and moved to another state with another man. Her husband was devastated. She just couldn’t handle the fact that he wasn’t going to get better even though he still could do plenty of things.
Your friend must have been so hurt losing the woman he loved that way. I hope he had family and friends like yourself you could rally round him.