Being different always results in spending more energy. Sara Ahmed explains this well in her “Living a Feminist Life”. Either you spend energy to ‘pass’ despite your difference, or you assert your difference and spend energy in explaining why you don’t just try to pass. Difference is an exhausting if inexhaustible way of getting into Catch-22 situations. What do you do when you can do no more and not doing anything is simply not an option? Not doing anything, for those who need reminding, is not an option because you are different and being different isn’t something you can shake off. It’s not peripheral to who you are. It is (an integral part of) who you are.
In matters of end of life one is often counseled to be patient or one becomes a patient. A Catch-22 in its own right. Either, so you are told, you are just exhausted and need to give yourself a rest or you are deemed too exhausted to give it a rest such that others need to intervene on your behalf. in the first case you are not really you. In the second case you are not a real you at all. But what if, with Ahmed, we neither want to be patient nor want to be a patient? Not being you, for those who need reminding, just isn’t an option as you are different. It being exhausting is not something you can shake off. It is not peripheral. You’d rather be dead then deny that you are (a) you.
Being autistic is being different in a mostly invisible way. It is certainly not as exhausting as being visibly different because, mostly, you can hide in plain sight. There is a sense in which autism is incompatible with being visibly different because: imagine you’re visibly different, what are the chances your difference in behavior is explained by autism rather than, say, by class or race or sex or something? This is already an unpopular opinion, but if you take offense at this: it only goes downhill from here.
Where autism is better than other differences in this regard – at least when you are born, as I am, in conditions of privilege – it is worse in another regard. Indeed, where it may be possible to create conditions in which at least some visible differences aren’t exhausting, this is not the case in autism. Let me explain. I can think of a society in which sexuality is of no consequence. It certainly is not yet realized but that it’s realizable can be seen from the microcosms in which it is realized. Such is unimaginable for autism.
I know many people get warm and fuzzy feelings of an inclusive society in which autism is fully included. Some even get sharp and cold feelings of societies in which autism is a norm. I get warm and fuzzy feelings about people, autistic and non-autistic alike, who’re spending effort to get a more inclusive society. I know it makes a difference to those who are different. Still, non-autistic people need to realize that they can get a rest from all this good effort being spent. Autistic people can’t shut that door. The effort always goes on.
I’m well aware that many autistic people dream of a microcosm where autism is a norm. They think that such is an environment in which they can shut the door to the effort they spend to pass (or to explain why they don’t want to pass). The problem here is double (it’s always a Catch-22 all over again!). Autistics are just like any other human being after all: unpredictable. It just so happens we need things to be more predictability. There’s just no microcosm in which all of us get their predictability. It ain’t going to happen. We’ll drive each other crazy before anybody non-autistic gets the chance. All praise to non-autistics who can live with less predictability and so absorb our unpredictabilities!
Put all this together and autism is about progressive cumulative exhaustion. Sure, we can recharge our batteries when we get in a predictable noise-free environment. Still, they’re never completely recharged before we go out again. And we want to go out again! So, the world can do better and worse by us (and we can do better our worse by ourselves!) but never to the point of breaking the cumulation of our exhaustion. My point is this: there is a maximum of exhaustion you can take in your life and then life becomes unbearable.
I’m not saying you should accept, as I do, the right to die. I’m not saying it is not my fault if I seek out situations which exhaust me more so my exhaustion cumulates more rapidly than it could have done. I’m just trying to get you to understand that for some of us – and specifically for the autistic some of us – we can be happy with what we did and be happy with what others did for us, and still be at our wit’s end. Don’t ask us then to be patient or make us into a patient but just accept we can be happy without willing to continue to be.
That kind of understanding, I am sure, is what makes the difference between euthanasia and suicide. In the case of suicide, there is a lack of understanding – which is why letters are written or points are tried to still get across. In the case of euthanasia there is a peace and quiet that others have understood that your wit is finite, that it ends. That peace and quiet is, if anything, what you can do to help me recharge my batteries. It just so happens that it requires you to accept that there comes a point my batteries cannot be recharged again. Batteries are always like that but where autistic batteries may burn brighter they, surely, reach their limit sooner.
Don’t ask me to burn less bright so I may burn longer.