Disability: It’s probably not what you think.

disability 1Disability, along with feminism, is a systematically misunderstood concept. Ideas of disability are so convoluted, so medicalised that we often miss the harsh reality individuals in society face. The social model of disability advocated by the disability rights movement argues that the way society treats people with disabilities is more inhibiting then people’s actual conditions.

(There is also a huge range of conditions/illnesses including physical, sensory, psychosocial, intellectual and neurological disorders that are all covered loosely under the term disability).

The whole point of the disability rights movement is to raise awareness and give pride and meaning to those who previously had none. This is a concept I only recently came to terms with on a personal level, which is why writing this article has taken so much time.

Ultimately, identity politics is as both a conversation and a conflict that goes to the heart of what people believe about themselves and what other people believe about a particular group.

I recently posted on my Facebook an article about ‘invisible disabilities’. In the post I suggested that no one decides who does and doesn’t have membership in a specific group other than the person in question themselves. As such, most commentary on who is and isn’t disabled fails to consider how an individual would choose to identify. And, although I have come to feel that I don’t owe anyone an explanation for why I believe I have membership in the disability and chronically ill community, I don’t think my journey is exceptional and that’s why I want to share it.

Three years ago (2011) I was diagnosed with grand mal focal epilepsy, a neurological condition. I am also a highly anxious, sensitive individual and I have experienced panic attacks in the past. So if you put those things together you have a self-perpetuating cycle whereby my epilepsy is reinforced and triggered by anxiety.

Initially, I didn’t really accept that I had epilepsy or what compromises I might have to make or how the way people interacted with me would change. To me having epilepsy was a challenge to how I perceived myself. I had always thought I could do and be pretty much anything and having epilepsy seemed to pose a threat to where I thought my life would be going. Suddenly, I couldn’t drive, my future at university was uncertain and my move to Melbourne for university was becoming increasingly untenable. For someone who has anxiety, and therefore feels they need to be ‘in charge’ of situations, being diagnosed with anxiety related epilepsy was literally a nightmare.

I won’t go into it a great deal but essentially as someone whose mantra was ‘I’m ok’ I spent a great deal of time in restrooms and my bedroom hiding from my feelings. I don’t recommend either of these strategies, as ultimately constant self-isolation solves nothing. However, I do think that there is no ‘right way’ to deal with a fundamental challenge to who you believe yourself to be. Any life change can be difficult and there is no time frame or expiry date on how or when you might feel better and come to terms with the new reality.

Even though my family and friends were very supportive and I was lucky to know many people who had lived with epilepsy for years I spent a lot of time feeling disorientated and lost. Eventually, I did crawl out of my deep, dark hole of denial and self-pity and decided I owed it to myself to really understand what my life might look like now.

Although I have come to terms with medications, side effects and physical and emotional changes that doesn’t mean the rest of society has decided to join me.

There are still a lot of misconceptions about various conditions including epilepsy. Disability is often considered synonymous with being broken, flawed, incapable, inept and just generally abnormal. Villains in Disney movies (or just movies and pop-culture in general) are often in some way disabled conflating disability with a character’s personal flaws.

People are not automatically flawed or less human because they are disabled.

People are flawed, as a central feature of personhood, irrespective of disability.

I would argue that despite some promising changes to law and shifts in thinking there is still a fair way to go to achieve a common level of understanding and compassion for people who are in any way different.

I was mistaken to think that my life was somehow over after being diagnosed with epilepsy. I was wrong to think that my place in society is less valuable than others. I spent an inordinate amount of time over the last few years trying to fit in and to accommodate other people. I felt like I was apologising for having epilepsy that it was my fault that I was excluded, that I owed people an explanation. It has taken a fair bit of thought and courage to realise I shouldn’t have to do that.

Because my disability is not immediately obvious I have had people ask questions and challenge my assertions. Mostly people are just curious and they want to understand – which I welcome. I will point out though that you should tread respectfully. Asking someone what’s wrong with you? is offensive. Saying but that’s not really a disability, you don’t really have a problem misses the point and belittles people: if someone chooses to speak about their experiences that is immeasurably valuable and should be treated accordingly.

I have chosen to identify as ‘a person with a disability’ because for me disability is more than the neurological condition that defines me as different. It’s about acknowledging the frameworks in society that limit choices for people like me and why society is built that way. Disability has given me a profound sense of identity and community. I have found solidarity in the more painful parts of my experience beyond what I could ever have imagined.

For me saying ‘I have a disability’ is about self-acceptance. Disability for me is about my personal narrative, community and a call to demand respect.

I am not naïve enough to think that everyone will accept me when I talk about having a disability. People haven’t in the past so I don’t doubt there will be people who will be difficult in the future. The only difference between now and three years ago is that I now understand who I am more clearly and I have no intention of accommodating those who want to undermine my sense of self.

So I will continue to tick the section on forms that say:

 Do you identify as a person with a disability

Because for me that rings true with my perception of who I am. I am committed to changing the discriminatory practices that regulate the place of people with disabilities in society.

I am aware that I run the risk of being excluded or rejected when I disclose my disability but that is something I have decided I will have to live with. I would rather work and live in a place that accepts me for who I am than to have to hide it. I also realise I am fortunate to live in a space where I can make that choice without fear of (most) serious discrimination.

I would never judge anyone who chooses not to disclose a disability or illness.

(Even though people with ‘invisible disabilities’ may seem to have more choice over whether we disclose an illness, discriminationation exists on many levels – see Naomi Chainey’s article on Ramp Up – Passing is not a Privilege).

I’m not suggesting that what is right for me is right or applicable for everyone. Some people don’t like labels or identifying with anything in particular and that is a perfectly acceptable stance.

Disability for me has been about reclaiming identity and deciding for myself what that identity means.

If I can be a small part of the movement that is trying to underscore the humanity of people with disabilities then I can only hope to have enriched my own life as well as others.

The point I am trying to make is you don’t get to decide whether I or anyone else has membership in the disability community, we decide for ourselves.

Let’s expand the choices for people with disabilities not limit them.

Let’s be prepared to be wrong about the way we think about people.

My greatest regret is not realising sooner that my whole conception of disability was at complete odds with how my life and the lives of others actually are.

So whatever it is you believe about disability, think again.

lrj

Laura is a keen lover of her border collies and believes they should be crowned king/queen/overlords of all other animals. Laura starts her days with too many cups of tea to count and ends them with a weird optimism that only someone who one day aspires to be taller than 5’3ft can muster. What you will probably learn from Laura is that she cares way,way too much about people and the world… but generally considers that a good thing.