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On Flat Earth and Disability

I'm slightly addicted to youtube videos debunking flat earth theories. The videos and theories they debunk are fascinating, though slightly sad, but I'm addicted because it is such an obvious example of confirmation bias. For a flat-earther, all the pictures and videos of the earth from space are fake. All the videos and pictures of satellites are fake. NASA is one big deceiving machine. The moon landing was all done in a studio. All government space agencies are in on it. Zoomed in pictures of boats disappearing from the bottom up don't highlight the curvature of the earth, they are just mirages. Anyone pointing out scientific discoveries that require time and equipment to 'prove' but have become basic foundations of our concepts of time, seasons and navigation (yes flat-earthers do use GPS but for some reason don't see the irony) are simply in on the lie. There is no getting through with facts and evidence, the flat earth conspiracy theorists already know you are wrong.

Confirmation bias is a beast that all humans deal with. It is the ability to decide something is right and then justify it through whatever means possible and whatever evidence to the contrary is discarded or adapted to fit your conclusion. Greater weight is put on evidence that corroborates your belief and evidence that goes against it is ignored, hidden or twisted to fit what has already been decided. It is often a subconscious bias and all of us are guilty of it at some point.

For us in the Rett community or living with or caring for someone with a disability we see it regularly. The professional decides that a child is unable to understand and has a cognitive deficiency from a short period of interaction generally because the child cannot speak. This interaction is often in a hospital room and under some form of assessment conditions. One example I heard about recently is of professionals trying to get a child to choose between a shoe and a banana and then making assessments on whether the child is able to communicate. The parent argued with them - a shoe and a banana are boring, she just isn't interested! She told them all of the stories of their child clearly understanding and interacting and even showed a video of the child selecting appropriate words through their eye-gaze device. The professional disagreed, don't you know that a 3 year old child wants to please and loves food and therefore would always pick the banana. The professionals expect the exact interaction on the video in the assessment room before they'll change their minds. The irony is lost on them that Rett Syndrome children aren't like "every other" 3 year old child and their assessment is flawed from the beginning. The parent is belittled and treated like they don't know anything despite living with and researching Rett Syndrome since the day their child was diagnosed.

Imagine the frustration of being asked to pick between a shoe and a banana. First off, it is just ridiculous, you're hungry and tired and you've already been put through several minutes of choosing toys that have been waved in your face and then taken away again. You know that you should select the banana but your brain shoots signals to your neck and hands sending your head in the direction of the shoe and your hands to your mouth. Before you can process the command and get your body to do what you're wanting to do, the professional has already decided that you just don't understand.

Rett Syndrome often comes hand in hand with apraxia which is the difficulty of performing tasks or movement specifically when asked. 'Normal' tests don't work with those who have apraxia and require adaptation to make space and time for the often random muscle movements. Sometimes cognitive development is delayed in children with Rett, sometimes they become the valedictorian (top student of a year group in the states). Sometimes parents know their child can understand and communicate because they did before Rett Syndrome took their ability to speak. Sometimes, like it is for us, we don't know where Rosalie is cognitively because she didn't get to speak before Rett Syndrome took her muscle control. We do know she understands and communicates through her eyes and her laugh and her ability to know what food she wants. She has worked out a few of the words on her eye gaze but sometimes it is plain guess work as to what she wants because she is tired, bored or just being a 3 year old.

So the parent has to be prepared to battle it out. We have to take videos to 'prove' that our children can communicate and have cognitive ability beyond what their body looks like. Our children get frustrated when they are put through uninteresting assessments by people that don't know them and aren't experienced with Rett Syndrome. Rosalie has failed every hearing test she has had because she gets bored! Our children love interaction, they recognise faces, they need time to communicate and they need time to get their body to move in the way they want it to if they can in the first place.

Fortunately for us, most of the professionals we have worked with have overcome their confirmation biases. Videos have helped show Rosalie's understanding and luckily this has helped change minds and opinions. Many parents haven't been so lucky and have left assessments feeling demoralised, belittled and angry. The professional has set the targets for the assessment, ignored the comments from the parent and there is no chance that the child can ever pass the test. The parent knows it is because the test is flawed but the professional 'knows' it is because the child just isn't cognitively able. When professionals have set confirmation biases it is almost impossible for those with disabilities to get the correct level of support.

We will continue to presume Rosalie understands and hope that through our raising awareness we can battle the confirmation biases that keep blocking the progress of children with Rett Syndrome.

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