What it's like to get your period when you have sight loss

I’m sure many of us remember our first lesson on the subject of periods. I know I do, although probably for different reasons.

I was sitting in class trying to look at a board that was swimming in and out of focus, unable to see the diagrams, or the demonstration on how to use a tampon that the teacher was giving.

Why? Because I’m severely sight impaired. I was born with septo optic dysplasia, a congenital condition that impacts my endocrine system that is responsible for hormone production and my sight. My optic nerves are underdeveloped (optic nerve hypoplasia) and I have nystagmus, an eye condition that makes focusing difficult.

That day in the classroom I felt too embarrassed to ask for help. The topic of menstruation made me uneasy and I didn’t want to draw attention to my disability. Having been bullied at school, I wasn’t about to raise my hand and give people something else to snicker at. So, with a sinking feeling, I stayed silent.

There was probably a lot of useful information I missed out on but being unable to see anything that was going on, I lost interest and my concentration wavered.

A few months later I started my period. I was at home on a Saturday morning, my mother was at work and I didn’t have anyone on hand to ask for help. I’d never had one before and when I started to feel like something was happening, I panicked.

I didn’t know whether to use a pad or a tampon, or how to use the latter, so I tried to watch some demonstrations online of what to do, but the videos weren’t accessible – they had no audio descriptions or clear audible guidelines on how to insert a tampon. 

I felt completely in the dark.

I was able to muddle through that situation but as my periods became regular, I had a lot of anxieties about leaking through and that I wouldn’t be able to see if I had. I often compensated by using the largest sanitary towel on offer, which was not only uncomfortable but made me feel like my options for sanitary products was really limited.

Periods are often portrayed as being easy and uncomplicated in adverts. You see someone getting their period, using a tampon and then going out for a night out clubbing – without any symptoms of PMS. For me this isn’t the case. I’ve gone through life feeling like an outsider because my lived experience of menstruation doesn’t fit the norm.

Inaccessibility has become a real problem. There are many things that are redundant or unfeasible for someone with a visual impairment like me, and this includes period products. Often the print and symbols on the packaging are small and there isn’t any stark colour distinction to tell the difference between them. 

This means I often have to use an app on my phone to read the packets in the middle of a busy shop. Instantly I feel like a spotlight has been shone on me and I don’t want to be in it. A task that is simple for sighted people becomes an uncomfortable and frustrating situation.

Companies need to work on their packaging for people with print disabilities, and there are workable solutions: things like making more distinctive colour contrasts, adding larger and easy to read text and implementing something like a scannable QR code that gives totally blind consumers a chance to get information on the product they are holding on their phone.

I have also felt the negative effect of lack of representation. I have never seen any disabled people – on TV, in films, on adverts – getting their period. I’ve never heard anyone with chronic illnesses talking about what it’s like having their period. It made me feel invalidated and invisible, despite there being many people like myself, with a variety of disabilities and chronic illnesses, who struggle in this area. 

It also creates ignorance amongst others. I’ve had people ask me things like ‘How do you know if you have your period when you can’t see?’ I find it a really strange question – firstly, it’s something I just instinctively know without needing to see. But I also track my period using an app so that I can estimate when it’s going to happen, and I know to expect it. 

Highlighting the disabled community’s experience around normal, biological functions would make the world of difference to me. Being questioned makes me feel like I’m being turned into some kind of spectacle or a curiosity to be studied. But at the same time I think it’s rather funny that people honestly think that having a period when you can’t see is so different from those who can.

We need to bridge the gap between disabled and non-disabled people surrounding periods. To do this we need to open the door for disabled people to openly talk about their bodies and the issues they might face. 

We then need to bring this discussion into the mainstream through educational and promotional materials, videos, podcasts, leaflets and packaging. Companies could improve on accessibility by consulting disabled people in the design process to consider a variety of different needs.

Disabled people are a huge diversity group in our society and yet we are vastly under-represented. Our stories may not exactly fit ‘the norm’ but that’s a good thing, because by allowing them to share their experience, we can begin to create a narrative that includes everyone.

Emily Davison is one of 11 voices fronting period-care brand Callaly’s campaign, The Whole Bloody Truth, which aims to provide a safe space for honest accounts of menstruation from all people. For more stories, search Instagram for for #TheWholeBloodyTruth.

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