Don’t Mourn For Us. Even as a phase.

In 1993, Jim Sinclair wrote what has become a key foundational writing of the autism movement – Don’t Mourn for Us.  It is time to move past this as a community however.

In 1993, Jim’s words were revolutionary – you may need to mourn for the imaginary child you didn’t have on the path to accepting the child you actually have. That the child you mourn for never existed.  That you need to go through that phase and move on. That you may need to mourn for the loss of your dreams and expectations, the realization that you never had what you thought you had (a neurotypical child).

That’s powerful and I won’t detract from Jim’s words here.

But it’s time to move past that. It’s time to move past the expectation that it is normal and okay to be upset when you find out your child is autistic. Even if that normal and okay upset isn’t directed at the autistic child, but directed at this mythical non-existent child you thought you had.

The gay community has went through this. 25 years ago, a child telling their parent, “I’m gay” would cause grief, denial, anger, etc. If the parent was a good parent, they would move past this phase and embrace their child. That was considered a great thing – that the child only had to watch mom and dad mourn for a bit, and that mom and dad got past it.

Today, we see story after story of a different reality – that of mom and dad saying, “That’s awesome, let’s celebrate!” There is now, in many families, joy that their child is living their life in a way that makes the child happy and complete.  Not sadness for loss of expectations or an imagined child, but joy.

Near the end of Don’t Mourn for Us, Jim says:

After you’ve started that letting go, come back and look at your autistic child again, and say to yourself: “This is not my child that I expected and planned for. This is an alien child who landed in my life by accident. I don’t know who this child is or what it will become. But I know it’s a child, stranded in an alien world, without parents of its own kind to care for it. It needs someone to care for it, to teach it, to interpret and to advocate for it. And because this alien child happened to drop into my life, that job is mine if I want it.”

I say parent’s can do this without letting go.  And where they can’t, we’ve failed as advocates to express what it means to be autistic.  Just as it took the LGB community years to get to the point where many parents no longer have to go through a -1-2morning process, it can take us years to get there.  But make no mistake – that is where we need to go.

We need to go to a world that finding out your child is autistic is no more tramatic or horrible or scary than finding out your child is gay (yes, I realize some people don’t have parents that can accept LGBT people – but that’s changing and the next generation will have an easier time, until one day no child is rejected on the basis of LGBT identity). Yes, your child may be disabled. Yes, your child may need to be raised differently than non-autistic children. Yes, your child may not be able to do some things (what child can do all things?). But I’m waiting and looking forward to the day when we don’t talk about how you need to love the child you have, this new-to-you creature, but rather that you just keep loving the child you’ve always known. Sure, you have a new label, but you knew your child before and you will still know your child.

THAT is what I want to see for the autistic community. Maybe that’s radical, but I don’t think it is. I think it is possible, even today, and should be the expectation. Sure, we should recognize the reality that some parents will have to grieve over the child they never had. But that doesn’t mean we should normalize this process or assume that everyone has to go through it. They don’t. It’s okay to not mourn. It’s okay to not mourn for any child, imaginary or real. And that should be the expectation for normalcy of parenting, with compassion (but not normalization) extended to parents that might not quite be here yet.

Making the Privileged Feel Better

What kind of things do physically disabled or blind persons need?  It’s simple: access to society.  The specifics are different – the wheelchair user might want to be able to go to school or work without having to literally drag themself up a step.  And the blind person might desire websites that are usable with screen readers.

Of course, these aren’t the only things desired – there’s a lot of inaccessibility in society as a whole that needs to be cleared up.

So, what do social justice minded, but non-physically disabled, non-trans, and non-blind people come up with? We need to worry about our language. We need to avoid saying, “Let’s run out to the store,” because that erases the existence of someone who rolls out to the store. We need to avoid saying, “Did you see that movie?” because that’s abelist and erases the existence of people who experience movies without using sight.

And that sounds good.  It sounds good to say, “Did you experience that movie?” or “Let’s go to the store” rather than the abelist, yet common, alternatives.

Yet, I’m going to cry out and say, “ENOUGH!”  Not because I think these are bad things to think about, but because, too often, what is behind these suggested changes is a bit more sinister than it appears. Sure, it could be a sincere desire to think about others. But where it fails is in actually listening to others.

For instance, my (albeit limited) circle of friends includes a couple of blind people who “watch TV” (their words, not mine), and neither would notice (or care) if the TV picture was present or not.  My wheelchair using friends “run to the store” occasionally, in their words. It’s important to listen to their words.

Sure, there may be people who are blind or physically disabled who dislike words like “see” and “run.”  But most blind or physically use these words exactly like the rest of us: as something other than literally seeing or literally running.  Few non-physically disabled people literally run to the store: we hop in our cars and drive, or, if we don’t drive, walk or use transit.  But little actual running is involved. As for “seeing” TV or  a movie, a better word would likely be “experience” to reflect literally what is going on, but seeing, in context, basically means the same thing.

Now, I recognize I’m privileged, and could be an ablest pig now – and hope that people (particularly people who aren’t privileged in the same way) speak up and let me have it, if they believe it’s appropriate.  I can demonstrate my true character by listening to what is said.  But, at the same time, I do believe I’ve listened to disabled people and that this type of language is not viewed as insulting, as it seems to be used by the vast majority of people for whom it is supposed to be insulting.

It’s also – ironically – appropriated words like look, see, run, walk, etc, which have a general meaning, and made them into words that can be used only when referring to the privileged classes! In essence, privileged people have decided when these words are appropriate or not, rather than allowing the non-privileged people to tell us what they find offensive and how we should respond to that.  That’s both arrogant and dismissive, and the utter opposite of respect.

But it feels good.  It feels good to look at yourself and say, “I’m more progressive and social justice minded, because I know there are wheel chair users in the world, so I avoid using phrases like, ‘take the dog for a walk’ or ‘running to the store.'”  It’s the same old thing that always makes privileged people feel good: being better than someone else (in this case, it’s mostly the other privileged people who aren’t so liberally minded, but it is done by “walking” over the top of the very people for whom this language is supposedly changed for).

I’ve written about this in a different context – the use of the prefix “cis-” to refer to non-trans people.  While I can find some trans people who do feel people should use the cis- prefix to identify themselves, and it’s a lot harder to find wheelchair users or blind people who object to the language such as “run” or “watch”, I find a striking similarity. I don’t like the term cis- because I feel it erases the existence of binary-identified trans people, particularly post-op transsexuals, and their self-identity. But I get shit for that stand. Ironically, I’d say 99% of the people who have a problem with my word choice are binary-identified and passing as – and thus taking the role of – someone with binary, “cis-gender” privilege.

Now, I recognize the social implications and difficulties faced by minorities trying to express upset towards something the majority does.  So I recognize that even if I was being offensive to trans, blind, or physically disabled people (among others), it’s very likely they would say nothing to me about it. Thus it would be wrong to assume that I’m not wronging them. But it would be equally wrong to not listen to the people who are speaking and advocating from a minority group and to find out what their concerns are, rather than simply assuming that I know what their concerns are, and thus can tell people how to treat “those people” with respect.

It’s actually got a lot in common with the “autistic” vs. “person with autism” debate, which comes down to whether or not autistic people get to define their terms and decide what is or isn’t offensive to us (most of us have decided “autistic” is not offensive).  Yet, well-meaning, socially minded people will actually argue with us and tell us we’re wrong – that we should be offended by “autistic” and should be glad to be referred to with the much-more-respectful “person with autism” label. In other words, they know best about our lives and experience.

Well, they don’t.  No matter how good it makes them feel to think they do.