I always had an innate sense of pride in who I was, regardless of my condition (Photo: Samantha Renke)
July is here and I’m excited – not just because of the football and the promise of ‘Freedom Day’ on the 19th, but because it’s Disability Pride Month.
If this were a movie I would expect an awkward silence now and see some tumbleweed rolling across the screen.
Most people have never heard of “disability pride,” let alone that we have had our very own flag since 2017. In all honesty, I only discovered her as a disabled woman about three years ago so that I won’t make it difficult for anyone to be ignorant.
But I hope that you will share your newfound wisdom far and wide as this month is not getting the respect and attention it deserves.
One reason it is not widely known, especially in the UK, may be because it coincided with the Americans with Disability Act (ADA) – the civil rights law signed in July 1990 that bans discrimination against people with disabilities.
It started as a day, but since 2015, the 25th anniversary of the ADA, the entire month has become an annual event worldwide – a space to end stigma and promote disability as identity, culture and the positive pride of many to share.
It also creates awareness and challenges the systemic ableism and discrimination that disabled and deaf people face.
Non-disabled people are asked to accept that disability is not a bad thing; it is a natural part of life and should be celebrated.
It all sounds wonderfully progressive, but I would be ignorant to say that the ideology is simple. On the contrary – it is complex and multifaceted.
Every person with a disability or chronic illness has their own story when it comes to the idea of a “disabled person’s identity” or when they are proud of it.
Every journey is sometimes more of a roller coaster ride of emotions and inner turmoil; confusing and lonely, exciting and empowering.
Some people who may not be happy with their condition feel pressured to accept their impairment or are proud of it. And in return, they feel guilty for not doing it.
Others I’ve spoken to on social media hate the concept; they argue that it is condescending and reinforces the idea that we are not satisfied with who we are.
I always had an innate sense of pride in who I was, regardless of my state of brittle bones.
I knew I was different. That’s the thing about a physical impairment that can’t be hidden. You can stick out like a sore thumb when you’re the only “disabled” person in your home, school, town, etc … but I was okay with that.
In fact, I once enjoyed the often derogatory and condescending attention; the ‘bless them’ comments and free candy that were given out out of pity by numerous friends and strangers.
As a teenager, six or seven years old, fortunately unaware that these acts were imbued with years of disability and systemic ableism, I felt unique, which seemed good.
It wasn’t until I started secondary school that I began to hate my disability identity and wish it went away every night.
In my darkest moments, I wish I would just go away.
While some may not particularly like the concept of “disabled pride”, I would argue that anything that encourages someone to feel shameless and without excuses for who they are cannot be a bad thing.
I wish I had known during my childhood instead of having to find out how fucking brilliant I am after many years of doubts, tears and grief!
I now know that it was others who found my disabled body to be non-normative, different or deviant.
You know, just when people around me told me that disability was a bad thing, from bullying or teachers and doctors saying I can’t X, Y or Z, all I wanted was me from the label to free that was given to me.
For most in society, my condition was something to fear and feel uncomfortable about. If you have a disability you cannot be anything else, you are not often seen as a person with multiple identities. They are defined by your impairment or condition.
The internalized stigma of some people is so ingrained that it can be embarrassing to identify with the word disabled or impaired.
In my experience this is common with those who may have acquired it in old age, they may not see themselves as disabled but only in old age – their body is “worn out”.
While some may not particularly like the concept of “disabled pride”, I would argue that anything that encourages someone to feel shameless and without excuses for who they are cannot be a bad thing
Then there are those who struggle with cultural stigmas; Families who may be ashamed of having a disabled child as it could be viewed as a punishment from God.
This is why it is so important that we stand up for our rights, because the gap in perceptions of disability – which means that non-disabled people don’t understand how disabled the world really is – is one of the main reasons why the Attitude changes slowly.
According to the 2018 Scope report, one in three disabled people believes that there is still a lot of prejudice against disability in the UK, but only one in five non-disabled people agrees. That’s a big difference in perspective.
Also, some people may not feel “disabled enough” – this idea can be reinforced by the disabled community itself with harmful comments that I see being beaten online. Even a group that should advocate for other disabled people can have internal fractures and harmful ideas about what they look like.
I often refer to it as the “disability top trump” where people argue about who deserves more attention, support, or sympathy. This is the moment when I am most discouraged, especially when reaching out to other disabled people for advice during difficult times, and these reactions increase feelings of vulnerability and loneliness.
Some of the most hurtful and shocking comments I have received online came from other disabled people, which made me feel even more isolated and excluded.
Society has been led to believe that anyone who is disabled must be a wheelchair user as this is the universal symbol for disability.
We need better ways to connect with the disabled community, to understand people with mental health problems or hidden illnesses, and to encourage them to be comfortable with disclosing their impairment without fear of judgment.
More: health
Disability has many faces – as reflected in the flag; Sensory perceptions, physical, invisible and undiagnosed mental illnesses are shown in different basic colors within a lightning bolt.
While it can be a minefield, I’m grateful that Disability Pride Month has gained momentum and social media has allowed the message to grow without censorship.
For some it may seem symbolic, but as an activist I use this time to challenge non-disabled people and invite them to debate.
If flying the flag means getting others to fight for positive change, I intend to make the most of it.
Do you have a story you’d like to share? Contact us by email at [email protected].
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