Why can't I be disabled and proud of it?

Hania Hany and Dina Tarek at an inclusive ballet studio for ballerinas with disabilities, to integrate them with girls in collective training to become ballerinas in Alexandria, Egypt, on March 8. ReuShow more

Disability pride is not something that most people are familiar with. So it was not surprising that a Disability Pride Month came and went and the majority of people did not know – including, ironically, many disabled people.

We are a large, marginalised community; 1 in 6 people worldwide have a significant disability, that is an estimated 1.3 billion people. Of those, 17.8 per cent or 10.4 million disabled people live in England and Wales while the Middle East is home to 30 million disabled people.

To be honest, I myself didn’t know about Disability Pride Month (July) until a few years ago. I live with congenital Ullrich muscular dystrophy and respiratory failure and am a full-time wheelchair user. So when I learnt about the notion of disability pride, I thought: "Why would you feel pride in being disabled? It's like saying I am proud to be a human."

Recently, my thinking began to change. I witness more and more discrimination and prejudice and see the strength, even in myself, in navigating a world that can often shun disabled people.

Disability Pride originated in July 1990 when the Americans with Disabilities Act was passed into law and a large-scale parade took place in Boston to celebrate. Pride is all about learning from others and embracing our identity even when it is synonymous with oppression and discrimination.

Disability Pride Month began in 2015, in which disabled communities come together to celebrate how diverse, unique and adaptable they can be. Disability Pride recognises those with physical disabilities, those with cognitive, intellectual or psychiatric disabilities, those with sensory disabilities and even those with invisible or undiagnosed disabilities.

Perhaps in the years and decades ahead, Disability Pride Month should increasingly be used as an opportunity to change perceptions of disabled people’s lived experiences and redefine disability.

I realise that I have fought hard for everything since birth – from getting an education to health care and entering the work force. Every time I leave my home and venture outside, I know I am entering a battlefield: taxis that won't stop for me, tall flights of stairs and even odd glances – as though I am an object that needs a thorough examination.

A few months ago, I was asked if what I have is contagious, as though you can "catch" a disability. Worse still, is that disability is seen as predicament worse than death; disabled people have been told by the more insensitive non-disabled people that they would choose to die rather than be like them.

Disability Pride Month is used by some disabled people to challenge the idea that disability is a bad thing, the idea that the term "disabled" is a dirty word that must be changed and the idea that every disabled person must heroically overcome their disability. All these ideas are "ableist", a notion produced by a society that has limited knowledge of disability. Ableism is ingrained in society, meaning we are raised with these misconceptions. As a disabled person, I have sadly carried these ableist attitudes because it is what society has taught me. I am not alone in trying to move such mindsets.

Fleur Perry is a law student in Swindon, England with Spinal Muscular Atrophy. The aspiring lawyer believes Disability Pride is vital as people sometimes meet her and say, “What a shame.” But disabled people don't exist for others to pity. We are good enough. We are not ashamed of our bodies, but of the society we live in that teaches people to think this way.

Ms Perry says that disabled people have a lot to be proud of. “We have built structures of our own to support one another. We take care of each other not by just "providing care services," but by understanding each other fully as human beings. We call out issues as we find them and we do what needs to be done to fix it, whether that takes hours or decades."

"We have our own language around how we describe ourselves and our experiences in the world, which is continuously evolving and growing. We have a rich history, not just of experiencing oppression, but of fighting it for ourselves and others, creating art, studying the world around us, and solving the unsolvable.”

Peter Torres Fremlin, writes the newsletter Disability Debrief, on international disability news with over 2,000 subscribers. It is read by policy-makers in government, the UN and those in the disability community around the world. The UK-based 37-year-old has been researching disability and has a different perspective: "Disability Pride is a beautiful and essential response to the many ways that society excludes us. I get a lot from seeing the marvellous people sharing what their disabilities mean to them and the more complex discussions that also arise from our mixed and harder feelings about disability."

Lucy Currier, disability activist from Birmingham and blogger at inclusivelivingconcepts.com, has cerebral palsy and believes that Disability Pride is “absolutely needed to help people feel good about themselves and their accomplishments even if it’s just small things. It is also important to raise awareness and educate wider society who have no experience of disability to draw upon.”

We need to look beyond the usual question of whether disability is good or bad; that's like asking if being a certain gender or belonging to a certain race or faith is good or bad. Disability is just different and that different isn't good or bad. In this way, disability isn’t anything more than a natural part of human diversity.

People may or may not know much about the lives and struggles of those living with disabilities, but occasions should be seized to dispel misconceptions about the community and the challenges we face. I am proud of myself and the disabled community for how far we have come, for the battles we have won – and are still hoping to win, in the fight for an inclusive and equitable world where we can all have something to feel proud of.