Libby and Lily-Mae On Womanhood, Period Care And Making Peace With Change
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In my second article on periods and accessibility, I chatted with Libby (19) and Lily-Mae (17), and their families, to better understand how those with intellectual disabilities like Down syndrome navigate the already complicated experience of entering womanhood.
I also spoke with Sheridan Jackson, Lead Programme Coordinator at youth disability provider Recreate NZ, and the head of MOXIE (Meaningful Opportunities Crossing Into Employment), a programme she set up to give young Kiwis with disabilities crucial work experience. Jackson is passionate about giving young Kiwis with disabilities the tools they need to make empowered decisions about their bodies and health: “Menstrual cycles are a complicated conversation to have with any young female, and this is only further complicated for someone with an intellectual disability who often has their rights to knowledge dismissed or are treated like a child/someone who doesn’t have a voice. I believe this is taking away their right to govern what happens to their own body. From working in the disability community for a long time, I understand that everyone’s support needs are unique, and some people may want/need the help of others, but that’s up to them to decide, as well as deciding who will provide that support.”
For Lily-Mae, her support network played a crucial role long before she got her first period at 14. “Like any teenager getting a first period, mine was painful in my tummy. But I had read lots of period books beforehand that helped me and I watched the IHC videos on puberty and periods (Lily-Mae’s mother Hayley cited a short film called Tara Grows Up as hugely helpful), and Lisa (Lily-Mae’s teacher aide) made me visual instruction cards on how to use a pad and what to do with it after you change it.”
This kind of preparation in the years leading up to Lily-Mae’s first bleed meant that the initial shock wasn’t as intense, “At first I was scared because I thought mum wouldn’t be able to help me change the pad or have a shower, and I didn’t know if I could handle the pain by myself. I was nervous and scared. But now it makes me feel mature as I realise that a period is your body getting ready to have a baby. I also talked about it with Molly who has Down syndrome too.”
The practicality of menstrual products has perhaps been the biggest hurdle for Lily-Mae, both physically and mentally, “I use pads but I really want to try to use tampons but I don’t know how to put it in or if it will hurt, so I asked mum and she said stick to using pads for now until I’m a bit older. I find the pads without the wings easier to use because it’s a bit tricky for me to peel the sticky bits off, sometimes they are too fiddly for me.” Sheridan reinforced this idea, “Basically, the more difficult a product is to open and use, the more difficult it will be for that person to manage their period, and the less likely they are to achieve independence and autonomy. This is where pads are a great option for the disabled community.” This highlighted an important point that I often think about; with the rise in sustainable menstruation options like period underwear and moon cups, so too has risen the shame heaped on those who choose to use more disposable options like tampons and sanitary pads. I think we have a responsibility as women to ensure we are never casting judgement on the decisions of another woman, least of all because we have no idea what factors have influenced their decision; whether that be a physical or intellectual disability, sexual trauma, or something else.
Like all women, having a routine and structure in place to manage her period has always been important to Libby, and helps reduce the more annoying aspects of it, “I was 13 when my period started and I told my step mum. To begin with it was torture and I hated it. I hated the cramps. My step mum was the only person I talked about it with.” But as time’s gone on, Libby has worked hard to create a routine that works for her, “My sleep schedule usually goes off track due to having to wake up in the middle of the night to eat chocolate, as that helps with sugar cravings and dealing with cramps. On the morning of my period I get up and drink water, I then have my apple cider water to help digest my breakfast. I then fill a hot water bottle and make a coffee and get into my hoodie and go back to bed to get some work done. I then watch YouTube to distract myself from the cramps.”
Both Lily-Mae and Libby spoke of the unique bond we feel as women to those who bleed. Lily-Mae said, “I feel a bond in my house with mum and Nova, because sometimes we all have it at the same time and that makes me feel connected to them. It makes me feel the same as them.” And For Libby, it was the sense of accomplishment that came from creating a routine and then sticking with it, “I love using tampons – which they have just upgraded to make it easier to use even if I have trouble with how to put it in. My advice is to have a routine that works for you, to help yourself to deal with the situation in a proper adult manner.”
Sheridan agreed with Libby’s advice on the importance of making a plan, “Periods can be messy, periods can be great, and periods can sometimes suck, but we all deserve the right to have our own period plan. Bodily autonomy and integrity are important for everyone to have. It is vital for independence, self-ownership, and confidence of one’s own body.”