“After you told us about your health, we fear that this course would be too much for your body. For that reason, we are unable to give you a spot on the course at this moment”.
This is a quote from a longer email I received last week. It was seemingly rejecting me from a course based on my disability. Or rather, rejecting me based on assumptions they had made about my body.
Receiving this rejection was heartbreaking in so many ways. The most painful was the fact that I had been treated differently due to my disability. What made it worse was that despite my anger, it was obvious that the email was written from a place of kindness and care.
So, to help others avoid this potential mistake, I want to break down some of the implications of this response.
A Side Note
Just an important thing to note. I contacted the people who had sent this email. We met up, discussed the email and I received both clarification and an apology. Their reasons for rejecting me were not solely my illness. They did, however, use my health as a way to soften the blow. This unintentionally made it ten times more painful for me!
This situation is resolved, and I still hold high opinions of the people who wrote the email. I do, however, want to write about it and use it as an experience to educate others. After all, it is common for people to be rejected from jobs, schools and other activities based on assumptions about their abilities.
We Know Our Own Bodies Best
“Damn! You are a grown-ass woman who is capable of making decisions based on reality”
This is the sentence a friend uttered when I showed her the rejection email. And honestly, it gets straight to the point. As someone who has lived in this sick body for 9 years, I know it well. I am more than capable of knowing how much energy I have and what I can do with it. I am the most qualified person to talk about my energy levels.
Despite this, in the past people have acted based on assumptions about my illness that are incorrect. Usually, these people know very little about my illness. Sadly, it is a problem that many other disabled people face.
There is a common slogan within the disability rights movement which goes, “Nothing about us, without us”. Very often decisions, both on a personal and a political level, are made for disabled people, not by them.
Some examples of this…
Here are just a few examples of this. When entering a bus with a wheelchair using a friend, the bus driver directed all his questions about her to me. This bus ride is her daily commute, not mine. However, the driver made snap assumptions at that moment. He thought that because she was in a wheelchair she was not capable of making her own decisions. So he turned to the person he felt was not disabled – me.
The friends of someone I know planned all of the help she needed. However, they did not once ask her what help she wanted. Unsurprisingly, they got all of her care needs wrong. It would have been much more helpful if they made these plans with my friend’s input. She knows precisely where she needs help and where she can manage alone.
For a more political example, think back to when the hospitals first filled beyond capacity during the pandemic. Many disabled people in the UK automatically had Do Not Resuscitate (DNR) put on their medical files. Not only were they not consulted first, but many only discovered this by reading their medical files. Once more, decisions were made on behalf of disabled people based on often incorrect assumptions.
This is Why Invisibly Ill People Stay Closeted
In most job interviews in my life, I have not come out as disabled. The reality is that discrimination exists. If you want to avoid facing this discrimination, you pretend to be healthy until the contract is signed. But it isn’t only when it comes to contracts, invisibly ill people often stay closeted in other situations. For example, when dating, making new friends or even with friends and acquaintances beyond people who need to know. I have a friend who did not tell anyone they had ME/CFS for two years. It only came out when their illness finally stopped being invisible.
As someone who tries to live openly as a chronically ill person, responses like this rejection email remind me why many people choose not to disclose their illness.
The Take Away
The takeaway from this is that disabled people know their needs and their capacity far better than anyone else. Instead of making decisions based on generalised knowledge of disability, or even a lack of knowledge about specific illness or disability, they will be making decisions based on their reality. At the end of the day, there are so many different disabilities and differences within each disability or illness that you really can’t know what someone is or isn’t able to do based on a diagnosis alone.
To truly champion diversity or inclusivity, you need to create a space where disabled people are free to be open about their disability without the risk of discrimination. Or at least with a space to acknowledge that discrimination probably will occur, but it can be talked about and people can learn.
Thankfully, in the end, this rejection was one of those instances where everybody could learn from the experience. That said, I would have preferred not to have gone through the emotions I did. So, if you take anything away from this blog post, it is the fact that disabled people are all different, but what they have in common is that they are the experts on their own bodies.
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