Agony Ass: Something Beautiful!

The Agony Ass is always something beautiful for us, so why reiterate it?

All kidding aside, “something beautiful” is one expression used by individuals with illnesses or disabilities, which is punctually misunderstood whenever used in media communication.

The positivity fetish

There are two predominant narratives about illness or disability: pity at any cost, with all the tear-jerking stories possible to feed the “pain pornography”; the second, perhaps more annoying than the first, is when the person is drawn almost as if they were a super hero who acts as a motivator for others.

Both are dehumanizing tones because in the first case you belittle an individual; in the second, more than setting an example, you seem to fault all people who cannot be happy and enjoy life as the inspiring characters show on media.

In addition, the story of the “happy and special” person is often exploited by the conservative media during debates on abortion or self-determination in end-of-life choices, with the hope of getting people on their side but without considering that everyone has their own experience developed in a very specific social context, which may be diametrically opposed to what others are living.

No one should feel inferior or superior because they want to live or die, smile or cry. We are simply human.

Talking directly and explicitly, “life is beautiful” but so many services are precluded to you because you are visually impaired and the world is built for the sighted. Positive thinking? Except that HIV drugs do not have affordable costs and without financial help from the state or insurance companies, no one in the middle and lower classes could afford them-the argument obviously applies to conditions other than ours.

“My situation has made me a better person?” It may be as you say, however, if I could I would gladly do without! And talking like that doesn’t make us unhappy, we’re rather realistic and aware of our limitations.

So let’s give up this artificial positivity and rather say “we enjoy living and our limitations urge us to improve the environment around us, even claiming that we be guaranteed the right not to suffer needlessly when it’s time to leave this world.”

Agony Ass: something beautiful

“Something beautiful” we talk about, is an expression used by Lorenzo: this young guy works for PizzAut, the first restaurant in Italy run by people with autism.

He talked about feeling “happy in his condition” and “no longer ashamed of it” because he has found the right company with PizzAut, professionals who were able to direct him in his work without marginalizing him in centers for people with disabilities; some associations, however, have protested even asking to censor Lorenzo’s words on TV, because according to them “autism is something beautiful” is a disrespectful statement and The Agony Ass is ready to respond in kind. What the heck are they talking about!

The context, folks!

From our limited knowledge on the subject, we know that there are autistic people who are able to live and work on their own, others have a partial independence, or someone else even requires 24-hour care but both financial and medical support is almost missing; probably the protest comes from someone who is caring for a non-self-sufficient autistic person, but what would be the point of censoring different experiences?

Context, folks, context. “Autism is a beautiful thing” is a sentence that needs to be contextualized in a specific background, so we quote what Domenico ‘Nico’ Acampora, founder of PizzAut, said about it:

[…] Lorenzo is a guy who has been bullied all his school life, a guy who did 4 years in a day care center for disabled people… and now he is living a moment of joy, of prominence, with a full-time, stable job that gratifies him…

For the first time Lorenzo no longer feels wrong about being autistic…let him say what he wants when he talks about himself .

Lorenzo is not a technician, not an educator, not a parent but just an autistic young guy talking about his autism and not making a treatise on autism …

Lorenzo, for the first time in his life, does not feel discriminated against and marginalized … let no one deny him the right to say what he feels and experiences.

I certainly will not censor him … even though I disagree with him, even though I think autism is a difficult and sometimes devastating condition.

And I say this as a parent of a young guy with very severe autism who therefore understands well the suffering of other families…

This is exactly why I founded Pizzaut, I wanted to build a different future when it’s possible…

and for this very reason I consider Lorenzo’s words, and his happy condition, a success.

[Source: the PizzAut Facebook page].

Before creating sterile discussions, people should always delve into the context because often and often the media indulge in sensationalism that harms people but, fortunately, this is not the case even if the news would have been greedy for any click-baiting site.

We would have been angry as well if someone had talked like this:

• “autism is beautiful: Lorenzo moves the Web;”
• “I’m happy to be autistic, Lorenzo speaks on TV;”
• “autism is a beautiful thing: young guy doubts effectivenesss of day care centers” …

If there were such articles published on the Internet with a lot of ads to earn money from, disability-related communities would have had every reason in the world to be outraged. In reality, however, the key points expressed by Domenico Acampora are very clear:

• the guy is talking about himself, a particularly happy phase of his own life;
• it is not “a treatise” on autism or a general lesson but an individual’s personal and professional experience;
• “when it’s possible”: PizzAut founder himself specifies that the project helps people fit into work and society if they do not experience a condition so severe that it precludes them from doing so.

Fearing diversity

Why are people with disabilities or illnesses so scary when they achieve in life? They probably destabilize the collective imagination, carried on for centuries, in which if you are not “healthy” you have to live segregated and the only thing you can ask for is pity. A narrative that benefits those who manage political and media power, which they want to preserve because they do not accept when it is a person considered “weak” who questions their granitic certainties based on nothing.

So here they are hoping to censor Lorenzo when he talks about himself, they take the piss out of us when we joke about our visual impairment or HIV, but why are there people imposing their way to deal with difficulties? Life is already complex as it is, we do not need someone teaching us lessons.

No one is right or wrong about these topics, everyone lives in their own way and the only chance we have is to join forces to simplify each other’s existence. We only wish to be free in expressing our moods for what they are, without sharing happiness or sadness depending on what others want to hear from us.