Access by Various artists

The internet has enabled communication on a level that could never have been imagined before the "digital era". Individuals with even the most complex identities and niche interests can find like-minded people with whom to virtually congregate.

People with disabilities have found that they have a voice, too.  Given that "disability" is a term that encompasses so many diverse conditions and impairments, for want of a better word, (we are always searching for better words), we do not speak with one voice.  What the internet has done is to allow us to contribute to an ever more complex discourse with a distinct narrative: that of what it is really like to live with a disability.  

Despite so many options open to me about who I could be, how much I might disclose about myself and how genuinely authentic, or not, I could be in my interactions with others online, I have only ever been myself on the internet.

Indeed, with the advent of social media, my online experience has been vastly enriched by being honest about who I am.  This could either illustrate a severe paucity of imagination on my part, or, as I hope is more the case, an evolution in online communication and connectivity that is enabling us to be more honest with ourselves and others about who we really are.  

I appreciate that there are a great many online communities that exist only in the imaginations of the individuals involved.  Fantasy, role play and even deception, for better or worse, will always be a part of the online experience.  People with disabilities can engage in those activities as much as anybody else, thanks to the democratic and increasingly accessible nature of the internet.

There is also great potential, only now being realised, to explore just what it means to live with disability.  People can choose to engage with others through online sites that attempt to represent all people with disabilities, often via organisations that exist in "the real world" and that also have an online presence.  They can also join online groups and forums that represent their specific condition, which has the advantage of shared experience.

Interestingly, more and more people with disabilities are choosing to create online communities themselves via their own blogs and websites.  I started my own blog last year and while my input is sporadic, I have enjoyed having a space where I can share my thoughts, most of which have so far been on the subject of disability.

Though I don’t pretend to have a large readership, I know through comments both on the blog and via social media that people with disabilities and able-bodied people are reading it.  That for me is very rewarding in that I am engaging in an exercise in shared experience and at the same time I am speaking to those who have limited knowledge of disability in a conversation that is allowing us both to learn more about the other.

My online presence has encouraged me to explore facets of having spina bifida and hydrocephalus that I had not ever considered, it has opened my eyes to others’ experiences, and it has allowed something I never expected was possible: a dialogue between myself and others, addressing issues around difference, acceptance and experience; shared and individual.

I have come to realise that people can no more understand what it’s like for me to have spina bifida than I can fully comprehend what it is to be able-bodied, or visually impaired, or Deaf.  The more I explore my own experience though, the more I want to learn about the lives of others who also live with disability.  I never expected that discussing disability would become such an interactive and enriching experience for me, or that it would become such a big part of my life.  It is teaching me things about myself and others that I could never have imagined learning in the "real" world.

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Chelle Hope also writes regularly on her own site, To Be Perfectly Honest.

I am disabled. Here’s some of what I have realised over the last decade about that. I have been privileged to work with wise and committed colleagues and peers and I acknowledge all they taught me. Not coming from a background in disability policy, services or activism added a different perspective.

Disability is what happens when your needs don’t match the world as it is right now. It’s that simple, and that complex. We’ll delve into this together over coming weeks.

Disability combines personal experience and social process. It is the interaction between how the world functions and how people function.

It’s way too easy to focus only on the individual, rather than what surrounds them, constrains them, enables them. We each have our own stories, but there are also bigger forces at play. Most of that is missing from educational and media coverage.

Impairment of our personal abilities is natural. Some of it just comes with age. Our walk and memory might falter, our senses become less sharp, even as our wisdom deepens (if we’re lucky). Some of us were born this way. Or our lives changed through illness or accident. It’s mostly not something to be 'prevented' or 'rehabilitated'. Disabled people have always been part of human history and despite the fantasies of eugenicists we always will be.

Society’s understanding about disability continues to evolve -- yet it is consistently reported by disabled people as our single greatest barrier to work around. Impairment means a person may have difficulty doing some things in their daily life, like moving around, hearing, learning or socialising. Other barriers occur when our needs aren't taken into account.

People do whatever they can to adapt to their surroundings. We’ve all done that or seen it. But there are limits. It’s hard to magic-up smooth footpaths, larger print, or respectful service at the moment you need them. Taking your own wheelchair ramp or interpreter everywhere (just in case) isn’t practical. Putting up with poor assumptions and constantly being an unpaid teacher about disability is draining. Our parents and siblings and friends can experience that too.

Some needs are provided for without question because we've always done it, or society quietly regards them as ‘normal’, or because the ‘right’ sort of people are involved. For instance, senior business executives get dedicated personal support people but we ration those for disabled students. Making your own travel bookings is somehow a worse fate than missing the same chance at an education as your peers.

Some abnormalities are also irrationally applauded. Even though we no longer regularly run from savage predators, being freakishly fast can get you a medal. Being able to communicate with New Zealand’s rarest official language, not so much. Nothing fair or sensible about it. You can see why many disability activists take a human rights approach.

Rather than trying to cure or ‘fix’ each person, let’s just make sure the settings we share genuinely work for everyone. Then we can all live to our potential and play our part in our families, our society and our economy. Our world faces some great challenges that require cunning, cooperation and tenacity to overcome. Disabled people offer all of that, hard-won from daily experience. We are also your neighbours, your family, your future. Fellow citizens. Fellow humans.

What we each bring is worth adjusting for, like we do for others - without challenge, without pity and without begging.

A worldwide Creative Commons Attribution 3.0 Unported License applies to this post. Sacha's personal website is here.