Living with a brain injury in an ableist society

Michelle #jumbledbrain — Thu, 20 Feb 2020 18:32:39 +0000

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.

Have you experienced the ableist society? What can we do to improve attitudes?