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Pathfinders Neuromuscular life

Blogs, News and Features from the Neuromuscular Community

What it’s like: to be a woman with a muscle-weakening condition

Suzanne Glover

This week marked International Women’s Day 2022 (08/03/22). The purpose of International
Women’s Day is to celebrate the achievements of women while crushing stereotypes and
challenging bias with an aim to achieve gender equality. The theme for this year’s International
Woman’s Day was ‘Break the Bias’ (#Breakthebias) – but what does that mean if you’re a woman with a muscle-weakening condition?

What is bias?

With that in mind, what is bias and how do we actually break it? Bias means having favour towards
one group over another. In history we have seen many occurrences of bias towards groups based on
gender, sexuality, race, religion, and disability (along with many other groups of marginalised
people). Experiencing bias makes it difficult for people to move forward with their lives and be
treated equally to others.

Bias as a woman with a muscle-weakening condition

As a woman with a muscle-weakening condition, I’ve experienced bias in many different ways. It has
made me feel excluded and ultimately fuels the internalised belief that I am less of a woman,
because I’m disabled. I have experienced the lack provisions to have fair and dignified access to
reproductive screening and health services. Trivial to some, but I have also missed the opportunity
to try on a wedding dress in the glitz and glamour of a wedding boutique because it’s not physically
possible for a wheelchair user. These are small parts of my life which I deemed to be important in
defining womanhood.

Bias for a woman with a muscle-weakening condition doesn’t stop at physical access. It’s also the
stereotypes, unrealistic expectations, and negative attitudes deep-rooted in our society. This kind of
bias comes from all directions, every day. Sometimes it’s glaringly obvious, but more often, it takes a
day like International Woman’s Day to draw my attention to the matter.

The expectations placed on women

As disabled women, we are faced with constant images of how a woman should look, it’s very rare
wheelchair user or a person with scoliosis is included in mainstream media. For me, there is also
strong narrative of what life should look like after marriage for a newly married couple. I personally
haven’t seen many rom-coms movies where the newlyweds happily pack up various pieces of
breathing equipment, a shower chair and some life changing drugs and set off on honeymoon…
Again, this narrative of married life seen doesn’t capture my life as a woman living with a
muscle-weakening condition. I might partly fulfil the wife stereotype by have my husband’s dinner on
the table for him coming home from work, but I certainly didn’t play physical part in the process by
peeling any potatoes. And sometimes failing to meet the expectations of the ‘ideal wife’ really
stings.

How can we #BreakTheBias?

So how do we commit to #BreaktheBias in 2022 for women with a muscle-weakening condition? Let’s
start by giving everyone equal access to medical care and delivering the care with dignity and
respect. Let’s teach society about disabled women, focusing not only on their condition but on their
hopes, aspirations, and drive for success that so many have. Let’s value them as a consumer, one is
entitled to the same customer service and experience as other female counterparts. Finally, let’s
rewrite the narrative on womanhood. Let’s make it one where difference is valued and celebrated.

by Suzanne Glover

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