about us without us

Ever wonder what it feels like to consistently hear and see in mainstream media programmes, interventions and whatnot, all about you but without you?

I am mentally exhausted, and still physically shaking from the effects of this programme:

Living With Autism – 9msn

It was very triggering, I could not vocalise my reactions coherently last night, but am going to try now. I could write a conference paper on this alone, or more, but here is a brief.

Big glaring questions:

1. A programme about autism… BUT… Where are the autistic voices? A few seconds here and there, nothing more. Would this be acceptable if it were a programme about, for example, Chinese culture and nobody bothered to properly research or interview Chinese people seriously?

2. Has anyone thought how a more ‘severely autistic’ person would feel, watching this? OK, so I know many so-called ‘high functioning’ autists / Aspies may be quite happy with the programme, and glad for the functioning label that sets them apart superficially from the ‘lows’. But not me. I am not considered ‘severely autistic,’ and there are some sympathetic bits in this programme, but it was in general quite horrible to endure.

3. I wonder what the response would be if Down Syndrome or any other condition were to be examined and presented in this way? Today’s trend is autism. Have we really evolved in our attitudes towards differentness and difficult deviations from the prevalent norm?

The world is a harsh place. For everyone. I can see it (the programme) attempted to be conciliatory and not sensationalist. But we still have such a long way to go towards mutual empathy. We want to ‘train’ our autistic children to relate along the ‘normal’ social parameters. Yet, there is no formal or rigorous ‘training’ for the social majority to relate with autistics along autistic paradigms. Those non-autistic people who want to, do so from personal experimentation and they struggle immensely. That does not help mutual empathy does it?

Autism is a difficult embodiment, for everyone. But MOSTLY for the autistic person. Parents, if you think your struggle is terrible (and YES it is indeed), multiply and compound your pain a hundred or more times, and THAT is the life your child lives every second of the day. The language used alone was terribly triggering. BURDEN was a big one. It was used on me all my life. I was kept in a golden cage of wealth and luxury, but denied my intrinsic beauty, and I was told I ought to be grateful. True, I rode around in luxury cars, clothed myself in designer togs, owned 200 pairs of shoes, ate at the best restaurants without blinking an eyelid, lived in lovely accommodations, and I was even someone’s pampered slave for almost two decades. My mistress treated me very well indeed. But the message to me was explicitly clear: I should not even dare to dream to live my life the way I always knew I could and should. The negativity is so ingrained that even now when I am no longer living off family money, I still feel a burden to society, and my close friends who are helping me now (neurodiverse + autistic friends) can attest to the deeply ingrained pain and PTSD I now carry about even daring to accept support and help from anyone at all.

I identify with the entire autism spectrum. I do not revel in being called “high functioning” at all, because that too is an oppressive label. HELP US but do not call us “burdens”, do not tell us how horrible your life is because we are in it. We are listening. We can understand. We know how hard YOUR life is because we are in it, we know, because it is a thousand times harder for us! We DO have empathy, just a different kind from yours. Parents, we did not choose to exist. You created a baby. You took a risk. Your risk did not hit the jackpot you wanted. Now you live a horrible life. Oh, and you are such heroes for not killing us in your state of despair? I hear you. Parenting is a nightmare, and worse if your child doesn’t turn out to be that wonderful epitome of human normality (in your dreams?). That is why I never wanted to create a baby of my own. It is called choice. I couldn’t face the responsibility, so I didn’t do it. Whatever your reasons, most of you had a choice. Your children did not have that choice. Appalling of me to say this? But it is simple truth.

On the flip side? When there are moments of beauty, that, too, is multiplied manifold. Mainstream programmes like this do not reveal the exhilarating wonderment of our world. It does not make for good TV. It does not pander to the suffering parents. The only audience who will benefit are the autistic (and otherwise idiosyncratic who may gain some inspiration). Not worth the effort?

I dream of the day when “interventions” include help for autistics to cope with the world ACCORDING TO OUR OWN INTRINSIC FUNCTIONALITY, and help for non-autistics to understand and cope with the autistic world. Understanding between different cultures takes hard work for all – right now, the battle is one-sided, we are ABA-ing autistics into neurotypicality. Not unlike creating Europeans out of Asians. It is no longer considered ‘correct’ to do so, is it? Granted, many in more ‘enlightened’ societies are beginning to embrace the idea of cultural hybridity (or at least pay some lip service to the idea?) – why not apply it to neuro-cultures then? I dream of the day when neurocosmopolitanism becomes a reality. And I am spending the rest of my life – the part that I have finally wrestled away from the clutches of neuro-colonial subjugation – to try and build this new reality. I will probably never see it happen in my lifetime. But perhaps your autistic children might, when they are adults. Let’s hope, shall we?

postscript: To calm my nerves, I had to play this beautiful video twice. I wrote: “After all that… here is an autistic voice. Not “high functioning” by your worldly standards, very “low” in fact, but I can tell you that she is so much more eloquent and highly attuned to true beauty than I could ever aspire to be. Now, THIS is what is inspiring. Just not good TV. (I had to watch this twice to calm me down after that autism programme!)”

2 thoughts on “about us without us

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