Category Archives: Chronic illness

BoPo or BoNo (body positivity and disability)

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A collage of 4 photos of me with Domo-Kun a large brown Japanese TV mascot

 

I am not body positive, I won’t go into too many details about the concept of body positivity itself because there are many people who can explain it far better than I can but the short explanation is that it stems from the feminist fat acceptance movement and aims to encourage people to feel better about their bodies it has also become a campaign for inclusion for those that aren’t always included in movements surrounding self love like fat people, Queer and trans or genderqueer people, people of colour*, disabled people.

I fall into more than one of these categories yet for various reasons I don’t feel a part of the movement. For as long as I’ve been self aware I’ve disliked myself, I don’t say this for sympathy or pity and I don’t want comments expressing that, I don’t doubt that a lot of this is due to upbringing and bullying at school and at home. Ableism and fatphobia were part of my childhood, I’ve been disabled since birth and dealing with unrelated chronic problems problems for several years and mental health problems since I was a teenager.

I’ve struggled with my weight for years and for most of my life I haven’t felt like I fit in anywhere, not able bodied but not visibly disabled or as impaired as disabled peers; even in school when trying to express this feeling to the head of special needs I was faced with ableism, I also never quite felt comfortable with my gender and sexuality. For several years I fought for a diagnosis and explanation for my chronic pain and finally last year I saw a rheumatologist and had an MRI scan and while getting answers was a relief it meant the fight for answers was over and I had to accept that this is my life now. People often say there’s a period of grieving when you become disabled and I didn’t think this would happen to me but it has, I’ve been really angry at my body and frustrated when there are things I can’t do that a few years ago I could, its hard accepting my wonky, bendy, tired body and facing my limitations, I know I’m not severely disabled and other people have it worse but that doesn’t help me.

It’s really hard for me to feel any love towards my body when it lets me down, holds me back, doesn’t work the way it should it causes me pain and fatigue, my joints go out more than I do and I often feel like I’m 92 not 32. Sometimes it feels like not being body positive or embracing and accepting my size and shape makes me a failed feminist; its actually refreshing to see people I look up to who that are plus size who openly share photos of their body both as a job and on their personal social media say they’re not body positive, its not that I want them to feel bad about themselves its more that I respect their honesty. There are also disabled people and people with chronic pain who are body positive though I know it’s a process and not something that just happens overnight.

In some ways inclusion is improving, especially with a growing number of plus size models and general visibility of fat people who don’t believe they should cover up or hide their body yet there are still flaws especially with disability. Scrolling through Instagram looking at the bodypostive, bodyposi and bopo hashtags shows lots of plus size people yet there’s a lack of (visibly) disabled people and many of the messages that come with body positivity have undertones of ableism such as the focus on health and healthy is the new skinny which are also problematic for people who eating disorders or people in recovery from an eating disorder, then there are the concern trolls who target plus size people and fat shame them by acting as though they care about the health of an overweight person (lots of disabled people are overweight because of health problems not the other way around). Big media campaigns like the Dove real beauty also fail at disability representation, are disabled bodies not beautiful? Disabled people are also subject to intrusive questions about their bodies from being asked why they use mobility aids to questions about their sex life and even accused of faking having a disability.

real-women-dove

Dove Real Beauty

The lack of visibility itself is ableist and sends out the message that only non disabled people should feel good about themselves and how they look, for something that is meant to be about inclusion it really needs to be inclusive and not just for one group of people because that’s not how diversity works. Feminism itself is often accused of being only accessible for non disabled white cis middle class women who have received a good education (I’ll be ranting about that soon) in an ever increasing digital age the body positive movement could be one way to change that by utilizing social media as a more accessible platform.

*Other groups of people also face exclusion especially people of colour but no one wants another white persons perceptive

Awesome people to check out:

Fullerfigurefullerbust

Annika Victoria

Body Posi Panda

Glitter and Lazers

The Feeding of the Fox

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Chronically commuting

A picture of me with London Underground roundel face paint

There are temporary toilets at Euston, fascinating I know but this meant walking from one end of the station to the other a minor inconvenience for many but something simple that ate into my already rapidly reducing energy supply.
If my body had a battery symbol it would currently be edging towards red, unfortunately I can’t put myself on low energy mode and I still have to get home. A simple thing like using the toilet or accessing public transport can become a mission when you’re disabled, people who live with chronic health problems and limited energy will talk about the importance of pacing (something I’m pretty bad at I am however an expert at crashing and burning) but along with pacing comes planning. Most people plan a journey especially if it’s somewhere unfamiliar or timing is needed but planning the most accessible journey involves more effort than a journey from A to B.

The standard London transport tube map

I’m not a wheelchair user and I can manage a limited amount of stairs so I’m less restricted than many other disabled people but the London Underground is not disability friendly (I’m not unaware of the age of the system and challenges in making it more accessible) but after working out where I’m going the next step is seeing if there’s a lift and whether that’s for all the station or just parts of it, is there a reduced escalator service (my balance and coordination and using a stick make escalators a challenge), if I get on a train part the way along the line can I get a seat, how far will I have to walk from the mainline to the underground. Often I’m tired before I’ve even started.

The accessible tube map

Energy isn’t just expended physically though, social interaction can be draining, thinking, talking, trying to follow the flow of a conversation can also be tiring especially when you throw in the neurological problems I have as a result of a brain injury at birth which left me with hemiplegia (I seem to have unknowingly won some kind of anti health lottery) all these things can add to fatigue and despite my  love of the city i can’t deny that Londoners are not the most patient people to be crammed on a train with.

People dismiss the idea of FOMO as another trivial millennial, Generation Y non issue but when you’re already several years behind your peers it’s hard to say no and slow down even when you should. Chronic illness, mental health problems, disability often do mean missing out of things or choosing one thing over another and in an age where we can see more and more of what people are doing with their lives without having to spend time with them it’s hard not to feel it.