What Does An Accessible Period Look Like? Menstrual Autonomy For Women With Physical Disabilities
This article is proudly supported by Me. Period Care
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Me. understand the responsibility they have as a period care brand to deliver for all women. Unfortunately, despite the progress that’s been made in the wellness industry when it comes to expanding our definition of inclusion, when it comes to access, many areas of health and wellness still contain barriers for those with a disability.
In this first article on periods, I wanted to have a candid conversation with a few friends of TTC to better understand the experience of women with physical disabilities. Because, as Grace pointed out, “As in most forms of media, disabled bodies aren’t well-reflected in the feminine care space, and I think that the traditional message of a super confident woman walking down the street with her tampons in her handbag is just annoying for those of us with a disability, and really all of us, because sometimes that’s not us. Periods are already difficult, they’re already another thing women have to deal with – and when your personal experience isn’t reflected in the media, it can be isolating.”
1 in 4 Kiwis live with either a physical or intellectual disability, so I’m conscious that this isn’t something that exists in a vacuum; it’s the experience of our friends, whanau and colleagues. All Is For All, Me. and The Twenties Club hope that this article reaches both the people who identify as women in the disabled community and those who aren’t.
We were on a family holiday when I first got my period, I was about 14 or so, and remember thinking, What the hell is happening?!, because it wasn’t red blood like one is told to expect! I learnt later that that there are different stages within a menstrual cycle, and that can influence how our blood looks.
My family and I always knew that having my period as someone with Cerebral Palsy would mean that I’d require support – and that it would most likely be from Mum. At that point in my life I was still very much reliant on other people (this was prior to me having a power assist wheelchair), and I’d made peace with the fact that assistance with my period would be part of the deal.
I was the only disabled person in my year at school, which added another layer of complexity to my experience with things, like menstruation, which I largely kept to myself. That’s something we’re used to doing; there are a lot of experiences – like someone asking if they can “pray for me” on the bus – that we just keep to ourselves. Things that we carry. That’s why building community is so important.
Trying to change pads at school without the help of my Mum was incredibly difficult because of my lack of dexterity and muscle tone, and I didn’t want just anyone involved with something so private. In addition to that, I spent a lot of my school years in and out of hospital for various operations related to my Cerebral Palsy.
Now, as a young adult, my view on menstruation has changed. I’m more aware that my period is a sign of wellbeing; it signals the opportunity to have children if that’s something I decide I want. For disabled people, we experience a lot of stigma in our pursuit of parenthood because most people assume we are without capacity to do so. So my period reminds me that, one day, if I decide to, I’ll be able to have a child and tackle the barriers that all women face – not just those with a disability.
In 2018, I was swimming with my siblings and nephew and we decided to climb up to the top of a 10 to 15 metre-high cliff to jump into the lake. We saw lots of other people jumping off the cliff too. As soon as I hit the water I couldn’t feel my legs; later we found out that I’d sustained an L1 ASIA A Spinal Cord Injury.
I grew up in a household surrounded by women, so thankfully periods have always been a normal part of our conversations and never something to be uncomfortable about! In particular, we have a family history of complications with menstruation – things like heavy bleeding, bleeding disorder and endometriosis – so it’s always been something we consider important.
I’ll be honest, periods have been a pain for me, and since acquiring my disability, the only parts that have changed are that they’re a lot messier, harder to clean up, and more complicated when changing sanitary products. There’s usually only one accessible toilet in public spaces, so this can be nerve-wracking if I find myself in a position where I know I need to change my pad as soon as possible and the toilet is already occupied. I’ve always felt more comfortable with pads; but they have to be winged pads.
With the support from my Mum, and on the advice from my GP, I recently made the decision to go on the contraceptive injection to manage my cycle. This was something we had to revisit after my spinal cord injury as there are only certain parts of the body where the injection can be administered and we weren’t sure how my wheelchair would implicate that – but thankfully my doctors and I found a way to make it work!
The contraceptive injection has given me some sense of control over my body; it allows me to move through my day without the added worry of whether I’ve leaked through my pants or needing to change my sanitary pad every thirty minutes. Plus, I started experiencing cramping with my period after getting my disability, so the injection has been a great way to manage that pain. Prior to getting the injection, I could only go a maximum of two weeks before bleeding again, so it’s been freeing to have a more regular “break” each month.
At the age of six, my family and I were in a car accident that left my left arm crushed, and a as a result it was amputated above the elbow. Being a minority in all environments can be really challenging, and I’ve spent the last nineteen years adapting and finding new ways of doing things – it’s something I’ve become extremely good at, but that doesn’t mean it’s “easy”!
I was one of the last girls in my friendship group to get my period and I remember feeling left out! I really wanted it! Classic teenage girl stuff. I was sixteen when it finally arrived, and growing up with three sisters and a mother who was a midwife meant that I’ve always felt safe and supported to talk about what’s going on with my body and health.
As an amputee, the biggest challenge for me has always been holding period products and not dropping them all over the bathroom floor, as well as the challenge of opening different sanitary items with one hand, like the bins in public toilets. Pads were always too difficult to manoeuvre with one hand, so tampons were the natural solution – this suited my lifestyle too as I did a lot of dancing and sport growing up. Twist-to-open tampons are best suited to me, but I still have to use my mouth/teeth to open them.
I spent the first few years of my cycle navigating considerable pain that routinely caused me to vomit and pass out. This was a horrible experience and ultimately influenced my decision to get a Mirena IUD inserted earlier this year. It’s been an absolute game changer.
Of course there are times when I feel frustrated at my inability to complete a simple task like tying up my hair or washing the dishes (most people are unaware of the tasks they need both hands for until they break their arm!), or when I struggle to fit into a piece of clothing. Not to mention being stared at constantly. Sure, it can make me annoyed at my disability, but mostly I feel really grateful for all the things I do have, for this body that I have, for the challenges I’ve overcome, and for the experiences that my one arm has afforded me.
High school was a pretty isolating time, mostly because the conversations around periods never matched my experience. My friends and peers would talk about how gross pads were, that pads were for old people, and tampons were so much better, and yet for me, pads were the most comfortable way for me to manage my period with my Sacral Agenesis. I think this resulted in some internalised shame which ultimately led me to lie to my friends and agree that tampons were better.
I’ve always struggled with my cycle and the aggressive PMS symptoms that came with it. I’ve tried various contraceptives to manage these symptoms and I think that’s when I’ve been the most happy – when I’ve actually not had a monthly bleed. This has changed recently, as I’ve started thinking about starting a family with my partner in the next few years, so now I’m more concerned with managing my cycle naturally, tracking it each month and generally having a better appreciation for it.
I feel lucky that I haven’t received any direct discrimination around my period, which I know is not the case for a lot of women with disabilities. Accessibility is something I’ve been thinking a lot about lately; whether that be price barriers or simply the location of products – I can’t tell you the number of times I’ve gone to the supermarket or pharmacy and couldn’t get what I need because I couldn’t physically reach it from my wheelchair.