Body positivity, chronic illness and Disablity

Disclaimer – That these are my own lived experiences and understanding from the research that I do around the NDIS and health-related topics please be aware that it is informational only and not to be used as a substitute for professional advice or working with a Planner, Disability Advocacy service or talking to your Medical and Allied Health team.

So this was such an interesting video to record and to watch the reactions to it as it seems to have resonated with so many people. In different ways but to tell the story behind this video we see that we need to know the characters that I am referring to,

The White Saviour friend - It is someone who wants to save you from a terrible fate, being disabled or living with a chronic illness. and I know that I am borrowing this term from indigenous peoples experience's with colonization and from people who have been historically and systemically oppressed due to popular thinking leading to segregation and separation from the rest of society historically this does include people with profound disabilities.

Health professionals - so professionals that are able to work with you to have a good quality of life.

Allied health professionals are people who work with the health professionals to insure you have a good quality of life vs a bad one and are able to help you manage people's expectations.

The supportive friends - these are friends that get your limitations and understand that they can't cure you and back you up when you stand up to your white savior friends and get that you need to vent not to be cured.

Support workers - people who are paid through government programs to help you in Australia this would be the NDIS.

The mother hen - this can swing two very different ways, becoming a person trusted by the person to give solid advice or a person who wants to save the person from themselves, or even a weird combination of the two.

The Food trolls - So people who don't believe you have an allergy or at events try to feed you food that is potentially dangerous for you to eat due to the "harmless," herbs they have put into it. Herbs aren't "harmless for people on medications," and often they can cause massive damage, to a person in the way of interactions.

Often, I find that this is something that the older people in my life fall into and I really like listening to their advice, as it is good solid advice, and we see that people need to be much more open to older people's advice.

So now we know the cast we see that there is a very complex next work at play here and it all center's around that a person with a disability or chronic health condition very often but not always can have mental health issues due to having to deal with this condition and often our well-meaning friends will say things that really invalidate the struggle and I mention some in the video, however, they are things like well at least it's not cancer or you are so lucky to have support or your so lucky you don't have to work.

You can see how this can really invalidate the person's experiences with their disability and health condition and this really is an issue to me because we see that it's not just bad support workers saying this it can be family and friends as well.

This is why I mention the white saviour trope in that people feel that they need to be rescued from themselves and while at some point this might have been true it's definitely not true for everyone with disabilities.

This is where the white savior trope comes into play due to the fact that people with disabilities often have been institutionalized, spoken to and for, and not listened to and it is still happening today with support companies dictating to a person the support workers they can have and having harsh penalties against a client if they cancel a shift but being able to cancel a shift at short notice for the client sometimes with not replacement's at all.

Now knowing the background, we see that people with a hidden disability or a chronic illness often aren't believed by their white savour friends due to the fundamental nature of their disability being hidden, this is often where people can get taken advantage of and have someone to support them is a great thing.

But imagine the frustration when one day your body will do what you need it to and the next it won't and because your friends don't see the bad days they don't believe you, so these are other characters that I need to mention is the food troll friend's that mean well but try to cure you by food that is healthy due to it having "healing herbs," in it.

You might be thinking well hang on what do all of these people have to do with body positivity, well quite a lot actually due to the fact they are all major players in my life at times and in other people with disabilities' lives as well due to the fact that it's getting harder and harder to get an NDIS package and people need to rely on family and friends what the NDIS calls informal supports.

So when these characters all come together we can see that it can make someone's life quite interesting in unexpected ways so things like the invalidation, or as I experienced someone telling me how she cured herself and how much it cost while trying to see how it would benefit me, when I really don't have the funds to do this and restricting diet is dangerous for me to do as it is a very specific diet I would need to take on. Not to mention it could be quite triggering as this person doesn't know how hard I have had to work to have a healthy relationship with food.

So now we have the background and you have got this far you might be thinking what on earth does this have to do with the Body Positivity movement, it actually has a lot to do with it, being that people can "look," healthy but as we see can have a disability or a chronic illness where the body isn't healthy as in the case of a chronic illness we see that people don't look sick, but could have a lot going on that we aren't aware of.

The body positivity movement came about through the disability community and it has been co-opted by extreme people who are in denial about what health looks like so it started out as a grassroots campaign in the Victorian era to remove women from corsets into more comfortable and practical garments. It also in the main campaign we notice that it excludes people with disabilities in a way due to the fact that by design our bodies are broken they are in fact disabled and this makes some people very uncomfortable.

So we see that the person that I am talking about in the video we see that she really didn't know how to take me standing up for myself and being realistic about my body and this is where it all ties in together that we need to be aware of the "Toxic," positivity in denying that anything is wrong and this can lead to health issues not being picked up before they get serious.

Toxic positivity is when a person denies reality in the pursuit of always being happy or positive however negative emotions have a place and can really motivate us to change, our behaviour and to challenge what we believe to be true and this is where some people with disabilities really do struggle and it's a very real struggle when you are so used to masking that it leads to physical issues.