Real Talk: Life Stories Are Not For Sale!

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“Good intentions count, but outcomes are important too”

Has it ever occurred to you that the seemingly taboo yet elusive “disabled” people could be your family members, friends or classmates, whom you used to play “Tag, You’re It!” with, or stroll around with during leisure times between classes? More people have disabilities than we ever realise, and discovering somebody is disabled could potentially change our perception of them. 

In this article, we will explore the fear and stigma that parasites our perceptions of disability, and how our good intentions of empowering, inspiring, or showing our acceptance to them could instead leave people with disabilities feeling more alienated and dehumanised. 

Inspiration Porn of the Media

Stella Young, an Australian comedian, journalist, and activist with Osteogenesis Imperfecta coined the term “Inspiration Porn”, whereby people with disabilities are called “inspirational” solely, or in part, due to their disability. 

We may or may have not seen these in action. Littered around social media are pictures of physically disabled people, usually targeted to abled people, with the emblazoned motivational texts:

“What is your excuse?” 

“Don’t quit before you try”

“The only disability in life is bad attitude”

Inspiration porn exists in various forms along a spectrum. On one end lies stories of golden glory on podiums and race tracks, winning multiple awards or scoring straight As, and on the other end is pictures of disabled people doing nothing in particular, in which the only reason people find it appealing is that they are disabled and the inspirational part about them is they “overcame” their disability to achieve something, and that makes them extraordinary. 

While this seems like a positive portrayal of disabled people and could therefore be translated as progress, it is difficult for actually disabled people to see completely eye to eye with that view. However, in order to understand the effects that the ubiquitousness of inspiration porn pours upon the disabled community, it is important to clear the fog surrounding one of our perceptions on them: how disabled people look.

Caricatures, Stigma and Stereotypes

What comes to mind when the term “disability” is mentioned? Perhaps you would associate it with a wheelchair, sign language and hearing aids. These are easily and more commonly remembered physical disabilities. However, other forms of disabilities invisible to the eye could slip from the grasps of our awareness, and people who have these ‘invisible disabilities’ end up being pushed off the seats they belong in in this world. As a matter of fact, some people could be unaware that they have a disability even till adulthood, until they chance upon or look up some posts, relate to them and start to realise that, no, they themselves were never the problem.

According to this page, there are 6 general types of disabilities.

  • Learning 
  • Intellectual
  • Mental Health
  • Hearing 
  • Physical
  • Visual

Let’s take Attention Deficit Hyperactivity Disorder (ADHD), a learning disability, for example. What may it look like? Okay, fine, being a bubbly ball of energy and “Oh look! A butterfly”—anyway, where was I? I forgot. 

As somebody with ADHD, the “Oh look! A butterfly” is such a common depiction of ADHD that it is funny to me, as it appears more like a caricature. It is not false, but exaggerated and oversimplified. 

ADHD is beyond hyperactivity. Even if someone looks quiet and shy instead of running around or being bubbly, they can have ADHD.

 To better understand this, imagine a scenario when the bell signifying the end of lessons has just rang, and the hallways are filled with rumbling chatter accompanying enthralled greetings shouted across. Some of them drag their feet and some of them only leave the trail of a door swinging close while others are packing.

You walk towards the waiting area and hear a steady stream of droplets hitting the ground and before you know it, the rain is forming puddles and streams as if it was building tiny homes in the holes and rivers in the grooves during their visit down on earth.

Some of us had to watch droplets race down car windows, some of us had to be late for our piano class, some of us were happily chatting with our friends unbothered, some of us watched as the crowd lessened and the rain thinned down before the familiar car finally drives in, while some of us were caved in our special hangout spots.

Now, recall one of those days and try to retell it from your point of view.

The rain fell for all of us, but none of us had the exact same story to tell, yet all of our experiences were still real and valid. The same can be said for disabilities and the different ways it manifests in somebody.

Another face of ADHD is substance abuse such as sugar addiction, alcohol or drug abuse. These are commonly frowned upon by society, but we have to realise that a person may be trying to self-medicate, for many possible reasons, such as not being able to afford a diagnosis, accomodations and treatment.

The point of the matter is: disability does not have a certain look, but it has stigmas, shame and harmful expectations attached to it, only made worse with the message sent by inspiration porn that disability is something to overcome in order to live “normally”, and we, disabled or not, do not have excuses not to do something or not to be successful. 

Disabled people, however, may receive the shorter end of the stick as their disabilities would be passed off as excuses. They would not be believed in and their struggles are invalidated when seeking help, especially when they do not behave like the caricatures and stereotypes perpetuated by the media.

Admirers and Saviours

By reinforcing the idea that disability is something to overcome in order to “live normally”, it attaches the thought that disability is something unfortunate to have. This leads us to fear ourselves or our close ones having a disability. Thus, seeing the glorified or tragic portrayals of disabled people on the media would make us view them as our source of inspiration; our brave heroes, or the ones we must save; the pitiful victims.

“You are my hero.” Wouldn’t that be an honour to hear that you are the reason someone could overcome the challenges in life? Ironically though, doing this reduces disabled people to become mere “objects”— something that only inspires you, but you have no interest in personally knowing them, nor do you have interest in knowing what they truly need or in making their lives easier. The intention is to hopefully empower, but it instead objectifies. 

Stemming from the objectification, there may be budding “saviours” aiming to alleviate the suffering of disabled people by being their voice or providing help in a way that is not needed by disabled people. The objectification of disabled people silently takes away the independence and the autonomy they have over how they tell their stories and what they need help with. For instance, a quick search of ‘autism speaks’ on Twitter reveals an organisation under fire in the Twitter Autism community— “Autism Speaks”, in which the community is constantly vocal about how this organisation actively harms the people they claim to advocate for. 

To put it simply, yes, it is difficult trying to live (,laugh and love, haha), especially without accommodations and tools.

Is it applaudable? Eh, our lives aren’t a performance or an inspirational story. 

Do disabled people deserve to live without their sole purpose and mission being to overcome their disabilities? Definitely.

Can we do it ourselves? Yes, we would like to be independent by having the right tools given for us to use.

Disabled people aren’t born for the purpose of being an inspirational figure to humanity. They are born to live lives just like able bodied and minded people, but maneuvering through a society that is built without regard for their existence makes it difficult.

Tips to Empower

Being coddled like a baby may feel patronizing to anybody, including disabled people. The coddling may manifest as tip-toeing around calling them “disabled” so as not to hurt their feelings, giving them help without asking or even refusing to provide them needed tools as we feel that would teach them independence.

Despite the well intention of someone protecting our feelings or helping us, we would all like to decide how we receive, react to, and deal with anything that affects us. In other words, we would all like to have autonomy. Instead of trying too hard to protect, try to support and empower. 

To empower disabled people, there are several things we can acknowledge or do. 

  1. Their disability does not define them. 

Look at them as individuals who have ambitions, identity, desires, personalities, opinions, emotions and all the other qualities which an individual could have, instead of only as somebody who has disabilities. 

Taking Chadwick Boseman for example; in light of his death, many have praised his dedication and hard work for battling cancer while taking on roles in movies such as the iconic ‘Black Panther’, ‘Da 5 Bloods’ and ‘21 Bridges’, highlighting his battles. However, Chadwick Boseman was more than just a victim who ‘passed away due to cancer’, or a hero who ‘fought through his sickness’. He is a man who was “a virtuoso actor who could do just about anything”, as told by Variety in an article detailing Boseman’s excellent portrayals of his character. 

Moreover, the disability they have could just be a branch of their tree, while they have other branches that make up and complete them. Each of us have our strengths and unique ways of expression and seeing the world, but we also have flaws in treating others and are bound to have many ruptures and repairs in many relationships. 

After all, disabled people are humans first and foremost.

2. Be flexible in accommodating and inform them of available options. 

As organisations or individuals who would like to reach out to the public, we can provide different accommodations. This is where we are responsible for learning what disabled people usually need to provide them with readily available options, without neglect of taking in the unique requests of each individual.

They may need to be informed and reminded of the accommodations that can be asked for, as the shame attached with asking for help may bury the hands that want to reach out.

Providing access, needs, and accommodations will not hinder their independence, it will encourage it and empower them instead. 

3. Believe their struggles and empathise.

Empathy empowers. Refrain from giving advice or judging them when they trust you enough to be vulnerable with you about their struggles. Instead of calling them “strong” or “brave”, validate them and give them supportive words as facing the daily struggles are emotionally, mentally and physically taxing for them. 

Moreover, telling them not to call themselves disabled or to “be positive” will inadvertently be denial and rejection of a part of who they are. Rather than trying to put a positive light on the situation it may help more if we listened to them and believed them, as accepting them for who they are will allow them to feel empowered. 

“Living, not surviving”

In conclusion, there has been a lack of understanding and empathy towards disabled people due to the misrepresentations on media where, often, they are used only for superficial gains. Empathy empowers individuals while sympathy separates communities. 

Children or adults, friends or strangers; all of them are individuals just like anybody. They have friends to laugh with and memes to laugh at, shoulders to cry on and dreams to chase, places to visit and movies to experience. 

However, it is made difficult for them and nudges at the need for accommodations and accessibility for ease of living, as opposed to the need for applause and admiration for constantly “overcoming”.

By: Amirah Farzana

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