I always had an innate sense of pride in who I was irrespective of my condition (Picture: Samantha Renke)
If this were a movie, I’d expect an awkward silence now and to see some tumbleweed roll 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, even as a disabled woman, I only discovered it around three years ago so I won’t give anyone a hard time for being unaware.
But what I am hoping is that you share your newfound wisdom far and wide because this month does not get the respect and attention it deserves.
Possibly one reasons it is not commonly known, particularly in the UK, is that it coincided with the Americans with Disability Act (the ADA) – the civil rights law prohibiting discrimination against disabled people, which was signed in July 1990.
It started as one day but since 2015, marking the ADA’s 25th anniversary, the entire month has become an annual event worldwide – encouraging space to end stigmas and promote disability as an identity, culture and to share the positive pride many of us feel.
It also creates awareness of and challenges the systemic ableism and discrimination disabled and deaf people face.
Non-disabled people are asked to accept that disability isn’t a bad thing; it is a natural part of life and should be celebrated.
This all sounds wonderfully progressive however it would be ignorant for me to say that the ideology is simple. Quite the opposite – it is complex and multifaceted.
Each and every person with an impairment or chronic condition has their own story when it comes to the idea of a ‘disability identity’ or having pride in it.
Each journey’s rather a rollercoaster of emotions and inner turmoil at times; confusing and lonely, exciting and empowering.
Some people who may not be happy with their condition feel pressured to accept their impairment or feel proud of it. And in turn, they feel guilty if they don’t.
Others I have spoken with on social media hate the concept; they argue that it is patronising and reinforces the idea that we aren’t happy with who we are to begin with.
I always had an innate sense of pride in who I was irrespective of my condition, brittle bones.
I knew I was different. That’s the thing with a physical impairment you can’t hide. You can stick out like a sore thumb when you are the only ‘disabled’ person in your household, school, town, etc… but I was fine with that.
In fact, I once enjoyed the often ableist and patronising attention; the ‘bless her’ comments, and free sweets given out of pity by numerous friends and strangers alike.
As a youngster, aged six or seven, blissfully unaware of these actions being steeped in years of disablism and systemic ableism, I felt unique which seemed good.
Only when I started secondary school did I start to hate my disability identity and wish each night for it to vanish.
At my darkest moments I wished I’d simply disappear.
Even if some don’t particularly like the concept of ‘disability pride’ I would still argue that anything that encourages somebody to feel unashamed and unapologetic about who they are cannot be a bad thing.
I wish that I had known about it while growing up instead of having to find out after many years of doubting, tears and heartache, to finally realise how bloody brilliant I am!
I know now that it was others that saw my disabled body as non-normative, other or deviant.
You see, only when those around me told me that disability was a bad thing, through bullying or teachers and doctors saying I can’t do X, Y or Z, did I want nothing more but to rid myself of the label I was given.
To most in society, my condition was something to fear and feel uncomfortable around. When you have a disability you can’t be anything else, you aren’t often seen as a human being with multiple identities. You become defined by your impairment or condition.
Some people’s internalised stigma is so ingrained that any association with the word disabled or impairment can feel embarrassing to identify as having.
In my experience, this is common among those who have perhaps acquired it through old age, they may not see themselves as disabled but just getting old – their bodies experiencing ‘wear and tear’.
Even if some don’t particularly like the concept of ‘disability pride’ I would still argue that anything that encourages somebody to feel unashamed and unapologetic about who they are cannot be a bad thing
Then there are those who have cultural stigmas to contend with; families that may feel ashamed of having a disabled child as it could be seen as a punishment from God.
This is why it’s so vital we advocate for our rights because the disability perception gap – meaning non disabled people don’t comprehend how disabling the world really is – is one of the biggest reasons why change in attitudes is slow.
According to Scope’s 2018 report, one in three disabled people feel there is still a lot of disability prejudice in Britain, but only one in five non-disabled people agree. That’s a big difference in outlook.
Plus, some individuals may not feel ‘disabled enough’ – this idea can be amplified by the disabled community itself with harmful comments I see batted around online. Even a group that should champion other disabled people can have its internal fractures and damaging ideas on what it looks like.
I often refer to it as ‘disability top trumps’ where people argue over who deserves more attention, support or sympathy. This is when I feel the most disheartened, particularly when I turn to other disabled people for guidance during difficult times and these reactions add to feelings of vulnerability and loneliness.
Some of the most hurtful and shocking comments I’ve received online have come from other disabled people leaving me feeling even more isolated and marginalised.
Society’s been led to believe that anyone who is disabled must be a wheelchair user, given that’s the universal symbol of disability.
We need better ways of engaging with the disabled community, understanding and encouraging those with mental health issues or hidden conditions to feel comfortable disclosing their impairment without fear of judgment.
Disability comes in many guises – as reflected in the flag; sensory perceptions, physical, invisible and undiagnosed mental illness are represented in different primary colours within a lightning bolt.
Although it can be a minefield, I am grateful that Disability Pride Month has gained traction and social media has allowed the message to grow without being censored.
Perhaps to some it seems tokenistic but, as an activist, I use this time to challenge non-disabled people and invite discussion.
If flying the flag means it gets others to help fight for positive change, I intend to make the most of it.