Photos by Helen Mak, featuring model Rachel Romu.
Disability activist and model Rachel Romu, spoke with easy. about menstrual health and challenging ableism in society. All references to Rachel taken from interview with her consent. The opinions and quotes apparent in this piece are Rachel’ own.
One thought that rarely crosses the mind of an able bodied individual, is what if?
What if, you couldn’t use the regular synthetic tampons that they sell at your neighbourhood drug store? What if you couldn’t even make it out of the house to buy menstrual products? What if instead of throwing in a tampon quickly on your lunch break, you had to spend ‘triple the time’ balancing yourself over the toilet while already drained of energy? These obstacles, and the women who they affect are often left out of conversations about periods.
That’s where Rachel Romu comes in, a 24-year-old current disability activist and model with Ehlers-Danlos syndrome (EDS).
Rachel is a former team Canada track athlete and Youth Olympian who, diagnosed with EDS in the fall of 2016, is now challenging society to look beyond the disability or illness that layers a person’s life. She asked that easy. take the time to draw light to her period- one that simply doesn’t exist in mainstream media.
Rachel’s disability is a combination of a spinal tumour (diagnosed at age 18) for which she has now received two surgeries and a rare connective tissue disease caused by a defect in collagen production. The disease affects the connective tissues which support the skin, bones, blood vessels, and various organs. Since Rachel’s form of EDS is hyper mobile she said that she experiences both skin and uterus issues, as well as allergic reactions, skin tears, bruising and anemia spikes/ estrogen withdrawals which cause her joints to loosen.
During her period her back doesn’t just ache- her hands have an increased rate of dislocations and subluxations and her ribs and shoulders are ready to pop out.
Rachel usually has to wear compression gloves during her period to keep her hands from dislocating and often feels that the parts of her body affected by her surgeries’ illness are ‘misplaced and misshaped.’
Period education with a disability as a layer is one reason that Rachel voluntarily assists in running two intersectional feminist spaces; one being a ‘spoonie space’ for people with disabilities and chronic illness. The term ‘spoonie’ evolves from ‘spoon theory’, a theory that offers individuals with disabilities or chronic illnesses a method for budgeting their bodies’ energy for the day with respect to their disability. According to Rachel, the theory offers the user a ‘body budget’ so that they can measure how much energy a task will consume based on their body’s capabilities. Depending on the time and day Rachel’s period will decrease her body energy by at least 15- 25% (taking up a whole $2 of her already expendable $10 budget). She said that the first two days of her period are the most painful, experiencing nausea, an increased heart rate, and a lack of an appetite despite simultaneously feeling hungry.
Rachel said that Inserting a tampon with an applicator causes her excruciating pain and since her skin is so sensitive, her skin tears if it encounters too much force. “I am a grown up and I can’t wear a full size tampon, I can only use the kind without the applicator,” […] “sometimes I just wish I could turn my period off."
With an increased sensitivity to synthetic fibres, some of the gentlest and most hypoallergenic products are still not compatible with Rachel’s body. “I have an intolerance for scented [menstrual] products and synthetic materials.”
Wishing that she’d known about easy. in the winter, Rachel said the snowy season is a lot worse for her on top of daily challenges. Even though a drug store may only be within a kilometre of her house, she is unable to get there unless the sidewalk has been shovelled and still then is extremely challenged in the weather. If she is able to make it out, she then faces the issue of finding products she can use.
Though birth control might help to ease the impact of her period, Rachel said that her health insurance doesn’t allow her to utilize it to the same affect that she could when she was younger,
“I’m on ODSP so I don’t get to take the birth control that may actually work best for me, I have to take the one that the government thinks is cheapest.”
Unable to work a full time job, Rachel hasn’t had her own health insurance in nearly two years. Although she’s someone who would benefit from a more specific pill, she would have to apply to the extended access program in order to switch. Rachel said this would mean proving that her disability can only tolerate one specific medication, (noting that it’s an inherently ablest act to make someone prove their disability). And since EDS isn’t a reproductive based disability, proving that need is much more a mountain of a task than it is a hill.
Understanding this pain and exhaustion is another reason that Rachel continues to push against ableist perceptions in society. She carries the same message in her modelling work, which she began this past April:
“I started modelling in a response to not seeing anything that was helping me accept, understand and feel positive about my experience. I didn’t want to feel resentful about my body’s state and everything its gone through.”
In sharing her story with easy., Rachel hopes to start a larger conversation about ableism and its impact on the lives of disabled individuals. She addressed that the images that we currently see in magazines and on television are about convenience rather than accessibility and accommodation. “One of the problems is that campaigns about body diversity frequently forget to include disabled bodies […] Where is the girl in a wheel chair? Or the guy with an arm crutch?”
Conversations about disability need to be about acceptance and accommodations and accessibility and none of those things can be considered a favour or a courtesy, said Rachel, “It has to be about levelling the playing field."
Follow Rachel in Instagram here.